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UNIT 6 ~ Where to Look for Resources? (Continued...)

UNIT 6 CH 3 – Where to Look for Resources?

CHAPTER 3 – LAW FEDERAL, STATE, & LOCAL
          INTRODUCTION
          INDIVIDUALIZED EDUCATION PROGRAM (IEP)
          SOME ABC’S OF IEP’S

UNIT 6 CH 4 – Where to Look for Resources?
CHAPTER 4 – FAMILY LAW
AUTISM EDUCATION
ANTI-BULLYING POLICIES

UNIT 6 CH 5 – Where to Look for Resources?
CHAPTER 5 – FUTURE CHALLENGES
INTRODUCTION
          FORTY SOMETHING  (Older adult)
          GERIATRICS  (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care,
  Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities, Hospice/Palliative.)

UNIT 6 CHAPTER 3 – LAW FEDERAL & STATE & LOCAL

INTRODUCTION

The Law, Court Systems, and an Autism Spectrum Disorder diagnosis from the American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM) involves considerations which include many characteristics. These aspects may be comprised of regional and clinical areas, insurance coverage qualifications and limitations, family financial standings, age groups, severity of diagnoses; plus, the opportunity to select a variety of instructional, therapeutic ‘treatment’ and ‘intervention’ programs.

State and Federal governments have introduced and maintained laws in many areas. Some of them are –

Food & Drug Administration (FDA)

Scheduled drugs which require close monitoring for use & abuse; approved & unapproved cannabis-derived medication. Monitors claims about food & drugs for consumers.

Drug Enforcement (DEA)

DEA & FDA work in conjunction to review, approve, schedule, & monitor drugs for use. DEA classifies chemicals used in drugs, plus determines how they can be used.

Governing Fetal Stem Cell Transplants

Stem cell review, regulation, procedures, & treatments are under the authority of the DEA.

Pharmaceuticals (including Medical Cannabis) & Insurance

Prescription drug coverage by most insurance companies require a copay. Help with coverage can come from Medicare Supplements & Waivers.

Education & Habilitation

Americans with Disabilities Act (ADA) governs education for students with disabilities. Habilitation benefits older persons with autism by providing programs to learn new skills, or keep the established ones.

Employment & Support

The Rebuilding & Autism Full Employment Act of 2020 provides job coaches, counselors, & job developers for persons with autism.

Offender Laws & Forensic Issues for the Courts

Court appointment of a Forensic Mental Health Specialist to assist a defendant with autism, in a court case.

Burke & Goldman (2015) believe that in the United States, embedded within the Individuals with Disabilities Education Act (IDEA), there are procedural safeguards to protect the rights of children with disabilities to access free and appropriate education (FAPE). Through FAPE, parents and school districts can use these safeguards to both mediate and initiate ‘Due Process’. If the parents and the school cannot resolve their disagreement then parents may use ‘Due Process’ under this law.

They say that, for instance, when parents become frustrated with the school district’s choice of settings and type of instruction for their child, they may choose to disagree with the school by using ‘due process’. Many parents resort to this procedure when learning that the school has placed their child in a segregated classroom setting (special education), as opposed to an inclusive setting (general education).

< My Thoughts >             “…choice of settings and type of instruction…”

Most of the issues causing frustration for parents can be about how Special Education Services are delivered. Many parents believe their child can be very successful with the appropriate support within a ‘fully’ integrated classroom setting; some call this the ‘Inclusion’ Model. While others feel that their child should receive services in a ‘sheltered’ Special Education setting (Resource Room), in public school. There are many ways to approach educating a child with special needs; some school districts educate these students on completely separate campuses.

Plus, the frustration parents may face, Burke & Goldman (2015) believe that the process can become quite costly. They offer that in some states, but not all, there are pro-bono attorneys who will assist the families engage in ‘due proces’s. If they cannot find support or pro-bono services from attorneys who will help them, every state has a Protection and Advocacy (P & A) agency to assist at a reduced cost.

< My Thoughts >      “…attorneys who will assist the families…”

It has been my experience that in smaller towns, attorneys may not wish to challenge the school district for many reasons. Therefore, parents who disagree with school placement decisions, often must weigh the possible financial burden of proceeding with ‘due process’ on their own. Some parents chose to petition placement of their child in a different school district, instead. This may require the family to provide their own transportation for their child, to and from school.

The authors state also that the Protection & Advocate (P & A) agencies are federally funded to assist families of students with disabilities. Also, helpful may be the National Council on Disability (NCD) when helping to identify or encourage attorneys to become involved in the disability rights arena.

Laurence (2018) lets us know that a child must qualify for Special Education in order to be included in certain programs. The Individuals with Disabilities Education Act (IDEA), a law ensuring services to children with disabilities, includes autism in its list of disabilities that it benefits and protects. However, just having autism is not enough to qualify a child for special education services, nor an IEP. There must be evidence that your child’s autism or ASD negatively affects his or her educational performance. There are also several additional laws which protect or provide benefits for children with autism.

When considering educational placement in any school, public or private, be sure your child will receive a type of individualized service to meet his or her changing and ongoing needs.

< My Thoughts >             “…educational placement…”

First, parents can educate themselves about what to expect when entering the ‘world of the school system’, whether public or private. Or, how to decide if you might want to ‘Homeschool’ your child until an appropriate placement opens up.

INDIVIDUALIZED EDUCATION PLANS (IEP)

The United States Department of Education Individuals with Disabilities Education Act (IDEA), is a law ensuring services to children with disabilities. This law includes ‘autism spectrum disorder’ (ASD), in its list of disabilities which benefit from the protection of the IDEA law. However, just having autism is not enough to qualify for state public school special education services nor for an Individualized Education Plan (IEP).

The six principles of and IEP –

Free & Appropriate Public Education (FAPE) for each child as ‘disability’ approved.
An appropriate evaluation, before determined eligible to receive an Individualized Education Program (IEP).
An Individualized Education Program (IEP) is a written statement of a child’s need for disability accommodations and modifications for education.
A Least Restrictive Environment (LRE) setting is where this IEP will provide for the child.
Parents and students will have appropriate notification, plus the opportunity to provide advice and consent, regarding the child’s IEP.
A copy of IEP Procedural Safeguards will be presented and received, yearly to parents and student.

The Individuals with Disabilities Education Act (IDEA), along with Section 504 of the Civil Rights Rehabilitation Act, and the Americans with Disabilities Act (ADA), provide for exceptional needs and/or services. For instance, an ‘exceptional need’ might be that the child may require a service animal to accompany them to school. According to ADA, tethered and trained service dogs are allowed to accompany the person with a disability into public schools, including where food is served. But these animals may be legally prohibited from sterile settings such as hospitals, surgery centers, school nurse’s offices, etc. Check www.ADA.gov for specific information.

Note: More about all ‘disability’ laws regarding disability services and public education on local, state, and government websites.

Waterstone (2014) advises us that the purposes of provisions in the Americans with Disabilities Act (ADA) law are to ensure that each person with a disability has every opportunity to become a full member of society.

Horoupian (2011) quotes the Americans with Disabilities Act’s (ADA) mandate allowing use of service animals to assist handicapped in public schools; plus, access to community settings, including –

Restaurants
Hotels
Retail establishments
Theaters,
Concert halls

Effective March 15, 2011, the types of animals are limited to animals which provide –

Assisting during a seizure
Alerting to allergens
Retrieving medicine or phone
Providing physical support & stability for those with mobility impairments
Preventing or interrupting impulsive or destructive behavior
Pulling a wheelchair
Assisting sight-impaired persons

This regulation makes it clear that the animal must provide work or tasks under the definition of a service animal; not just for well-being comfort or companionship.

Prior to this, Finkel (2010) wrote that the law in Illinois was ‘fuzzy’ when it came to ‘service dogs’ in the school classroom. In addition, he reported the school district’s attorney as saying that having a dog in the classroom has safety issues, and is a distraction for others. “It’s potentially disruptive for us. We don’t feel that it is necessary for the student’s success.” The court, however, ruled in favor of the family.

Note: More about Dog Assisted Therapy in Unit 7 – 4 Complementary & alternative Medicine (CAMs); Section 4, PART 1: 2. Animal Assisted Therapy, a. Dog Assisted Therapy.

Yen & Mao (2011) say that the Individuals with Disabilities Education Act (IDEA) is the primary law that is invoked when parents are trying to access services of their qualified family members from age 3 to age 21, for educational needs. It includes Family Educational Rights & Privacy Act (FERPA) and Least Restrictive Environment (LEA). There are procedural safeguards in place, and families of children and adults with autism may need legal help to navigate the system when attempting to gain access to these and other necessary programs.

They go on to say that parents often encounter unanticipated challenges in their efforts to find optimal treatment and educational placement for their disabled child. One of the most difficult obstacles involves dealing with the legal aspects, such as the wording of the student’s Individualized Educational Plan (IEP).

Staff Writer (2018) states that – As a parent, you are an equal member of the IEP team and an expert on you child. If you have questions or concerns, speak up.

Ideally, you child needs a well written plan to be developed within the first weeks of school. For your part – provide all the data you have regarding your child. It would help to have a cover letter to request a meeting so that you can better understand how your child will be received.

Before you go to that meeting, have some idea what you think that your child will require, in order to benefit from all the school has to offer. There are three main documents which may be designed to meet your child’s needs. An Individualized Educational Plan (IEP), a 504 Plan, and an Individual Health Care Plan (IHCP). And, make certain you receive and read a current Procedural Safeguards booklet.

Briefly, for children with disabilities, an IEP provides specialized instruction and accommodations. The 504 Plan provides accommodations, but not specialized instruction. The IHCP would provide the student with access to the nurse’s office for medication, or other health care services.

< My Thoughts > “…Individualized Educational Plan (IEP)…”

From the desk of Sara Luker, Special Education Teacher of Record – an excerpt from a middle school student’s IEP (SANDRA is a fictitious name).

An IEP’s justification statements for placing a child into a Special Education Program could look like this –

SANDRA needs specialized instruction, accommodation, and modification in math, reading and writing curriculums; despite modifications within the general education environment.

She is unable to produce work to the standard, and in the time required, in the general education curriculum of math, reading and writing classes.

She benefits from acquisition of basic skills in math, reading and writing, with specialized materials and methods aligned at her instructional level.

She functions at an instructional level below that of her peers and as a result can experience negative, exclusionary social interactions regarding her social and academic performance.

Her need for intensive basic skills in math, reading and writing would disrupt the delivery of general curricular instruction to others. She would receive a portion of her daily instruction in a resource room specialized setting.

The only known harmful effects to this educational plan would be decreased time with general education peers and possible reduced exposure to the general education curriculum.

Understood Team (2019) explains that the ‘IEP Team’ is collective group of individuals qualified to interpret data and help to develop your child’s IEP. Members include, but not exclusive to –

Child’s parent(s)
Special Education Teacher(s)
General Education Teacher(s)
School psychologist
School Administrator (or representative)

If desired –

Child/student
School therapist (physical, occupational, speech, etc.)
Parent/child advocate
Parent friend/relative
Language interpreter

Each team member may contribute, present and interpret evaluation data about the child. Compiling this information helps the parent, child, and other team members understand the child’s strengths, as well as their necessary areas of focus. Most areas of focus are those in mathematics, reading, and writing. Depending on the student’s grade level, other areas may be ‘behavior’, and/or assistance, accommodation, and modification for studying, homework, and note taking.

< My Thoughts >               “…necessary areas of focus.”

For my middle school students, there was an additional IEP provision allowing them access to the Resource Room, at any time; before/after school, and any ‘time of need’, during the school day. This allowed them to come to us for test taking assistance. Often times, they needed to dictate or type out answers to ‘Essay Answer’ questions.

Staff Writer (2017) says that part of a student’s IEP requires that a written statement of the child’s disability and how it affects his/her functioning in an academic setting. According to Section 300.320 (a) of IDEA, this statement must be a complete description, as to the need for a portion of daily instruction, to take place in a specialized setting.

< My Thoughts >   “…a portion daily instruction…”

A student’s IEP contains 15-20 pages of information and documentation. Each section of the IEP is equally important. In the first statements, there must be written proof of the ‘justification’ for spending a portion of daily instruction in a ‘specialized setting’. Thus, a reasonable explanation for spending part of their instructional day, removed from his/her ‘general education’ teachers and peers.

The Special Education Teacher of Record, gathers data and documentation to create a ‘word snapshot’ of the student, as seen by all those involved with him/her. This ‘team’ contributes to, develops, and presents the IEP document to the parents for their approval. The parents are part of the ‘team’ and must be in full agreement as to the implementation of their child’s IEP before any school placement can proceed. Therefore, they are also encouraged to provide additional information. For instance, data, or any documentation of the child’s progress or completion of programs, therapies, and/or outside services.

Watson (2019) wants parents to know that, according to the Individual with Disability Education Act (IDEA) their child’s educational setting must be stipulated. For example, they may receive a portion of their academics in a ‘Resource Room’ setting. This is a ‘separate space’ on the school campus where a child with ‘special needs’ can receive alternative instruction, according to their Individualized Educational Plan (IEP) goals. While other special education students may spend a portion of their day in a less restrictive environment (LRE); such as, along with nondisabled peers in a general education classroom setting.

< My Thoughts >                       “…‘Resource Room’…”

“SANDRA will spend 45% of her day in Resource Room.” Parents may see the ‘portion of their child’s day represented by percentage. For instance, she will receive 15% of the school day in Resource Room for specialized mathematics. And so on – 15% of the time for reading, and 15% of the time for writing instruction.

Besides receiving special instruction in Resource Room, this is a place where students may come to have assistance with classwork, assignments, and homework. This is also a place for keeping specialized notes, notebooks, and other items which will help them throughout their academic day. As an example, one student kept all of his math notes from previous year’s classes, in the Resource Room for ready reference. Another student found it less stressful to have a personal locker in the room, instead of in the school hallway.

Yell, et al. (2003) contend that the placement issue that has proven to be the most controversial and one of the most frequently litigated is the Least Restrictive Environment (LRE) requirement part of IDEA (Individuals with Disabilities Education Act).

< My Thoughts >             “…IDEA.”

The Individuals with Disabilities Education Act (IDEA), has two fundamental educational requirements – Every child will receive a Free & Appropriate Public Education (FAPE), in a Least Restrictive Environment (LEA). Many in the ‘educational world’ refer to LEA as ‘mainstreaming’ the child. Or, educating him/her with non-disabled peers, in the regular classroom; often with some level of support.

The LRE mandate requires that students with disabilities receive their education in the general education classroom, to the maximum extent appropriate. Or, when the general education setting is not appropriate, in a setting with the least amount of segregation from a student's nondisabled peers.

Foley‐Nicpon & Assouline (2014) clarify that having accommodations for a ‘disability’ in an academic setting is typically based on federal legislation, such as the 1990 Federal Education Law – Individuals with Disabilities Education Act (IDEA), which include students identified with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Specific Learning Disabilities (SLD). Twice-Exceptional (T-E) students can be verbal or non-verbal, but show exceptional reasoning abilities and may have high performance skills in math and/or reading.

These same students most often have difficulties with personal characteristics, but have increased success in a supportive environment where there needs are accommodated. And where many of their other classmates will have come from an Advanced Placement (AP), college-like course curriculum.

Hinds (2014) holds the belief that children with autism do not find the same things rewarding that a typical child might. Using something that an individual child enjoys to reward their behavior seems obvious, but it is not always easy to identify what those things may be.

Children live in two worlds; home and school, with restricted interests in both. At home, Ryan always had me and the rest of his family to guide and protect him. We weren’t there to help him at school. if you want to be a successful advocate for your child at school, you have to become familiar with their IEP (Individualized Educational Plan).

< My Thoughts >             “…at school…”

As well as the traditional parts of their IEP, another way to advocate for your child at school, is to make certain that it includes ‘understood’ assurances. Such as the underpinnings of the 2001 No Child Left Behind (NCLB) law provisions.

My extended thoughts about your child’s school experience expectations would be –

Expect gender equality…for bathroom use, shower and dressing accommodations for physical education classes.
Expect nutritional food…choices, and a safe place to eat.
Expect a healthy environment…in all places on the school campus.
Expect assured safety and security…in all places on the school campus.
Expect an opportunity for lifelong learning…availability of ‘elective’ career & technology classes.

If you find that you cannot ‘expect’ these things, then you have the right to ‘request’ them. An extension of that would be to see which ‘elective’ classes most general education students are being offered. Decide if any of those classes would benefit, or be of interest to your child.

Greer (2005) writes that the Individuals with Disabilities Education Act (IDEA) guarantees to all school-age children with learning disabilities (including autism) a free and appropriate public education (FAPE). There is a 1991 Act addendum which extends that guarantee to preschool children as well.

IDEA also requires that school districts draw up an Individualized Educational Program (IEP) for every child in special education. Parents, school psychologists, school administrators and teachers meet to ‘hammer out’ the IEP. This document specifies the student's educational goals, and the services that the school district will pay for; anything from treatment in a hospital-affiliated autism clinic to placement in the school district's program.

< My Thoughts >             “…’hammer out’ the IEP…”

In my experience, as both a Special Education teacher and the parent of a special education student, those most likely to develop (‘hammer out’) the IEP would be the school psychologist, school administrator, both Special Education and General Education teachers.

The parents are an integral part of the IEP team, but not always part of the development. Parents are asked to agree to the IEP, upon the conclusion of the meeting. Of course, there will be a discussion as to IEP content, often times a very heated discussion between parents and the ‘school team’. During this meeting, parents are allowed to, but seldom take advantage of, bringing an advocate or other representatives along to help sort out any disagreements.

Greer continues with what ‘parents want’ and what ‘school districts are willing to provide’ sometimes (often) doesn't match up. To understand why, “consider the philosophy behind special education,” says the American Psychological Association's assistant executive director for policy and advocacy in the schools. Under the IDEA law, he explains, schools are required to give students the opportunity to make educational progress, but the law does NOT require them to educate students to the child’s absolute highest level or maximize their potential.

Some autism treatment programs require more than 40 hours per week of one-on-one work between a child and a trained therapist, which can cost between $40,000 and $80,000 per year. Many school districts argue that such expensive services are not necessary for a child's education, let alone affordable.

Indeed, individual school districts must pay for any services included in a student's IEP. We hear – "Of course parents want what's best for their children, and school officials’ careers are dedicated to providing education." But it can be difficult to make the ideal program match the reality.

< My Thoughts >             “…it can be difficult to make the ideal program match the reality.”

This 2005 statement, in many cases, still holds true today. Parents want the best for their children, and educators want the best for their students. One of the ways to have ‘special’ programs match the reality is by promoting ‘flexibility’ throughout the goal setting and goal reaching process. Another, would be to make certain that ‘goals’ are defined as ‘short term’ and/or ‘long term’ goals. Plus, determine if goals are being met, by requesting follow-up ‘progress’ meetings, long before the 1-year IEP Review date.

There can be several ‘IEP Review/Revision’ meetings, during the long IEP year. To guarantee this, parents may ask for ‘revision’ meetings to be written into the initial document. An advantage of a follow-up/revision meeting for instance, could be adding a ‘Behavior Intervention Plan’(BIP) to an annual IEP. These new behavior goals helped one student understand his behavior, and understand teacher expectations; when he is transitioning to and from certain settings.

Hinds (2014) has an intense focus to fix her son Ryan’s autism. She shares that sometimes it made me less than sensitive to any needs the teachers might have that were not centered on my son. Past experience had taught me that great credentials didn’t guarantee a person would know how to work with my son.

His second-grade teacher did not make much progress that year. She just wanted him to be the best little autistic boy he could be. She had no expectation for him to act like typical kids. The IEP team knew it looked good on paper, should there be any dispute. I could have refused to sign off on it, but I felt cornered.

< My Thoughts >             “…I felt cornered.”

I just wanted to say this about that. If everyone on the team, ‘except you’ as the parent, feels comfortable with your child’s IEP goals and interests, please don’t force yourself to get comfortable with ‘their’ plan. Consider several things –

One – Is what is being agreed to on paper (IEP), actually what is/will be happening consistently in the classroom?
Two – Does the team ‘only come close’ to providing the services or curriculum that you want for your child?
Three – Do your prioritized wants and needs match theirs?

If they don’t have the same picture of your child that you do, then SPEAK UP! If you feel marginalized, not being heard; or seem to be invisible; trust your ‘parent radar’. The IEP may meet the ‘team’ needs and their ability to provide for services, but does it meet your needs, or your child’s? The IEP is a ‘legal’ document. You have the right to engage advocates, mediators or even legal advisors to guide you through the IEP meeting process. As well, you have the right to consider DUE process; provided by the Disabilities Education Act *IDEA).

One of the first parts of the IEP process is to notify parents, in a timely manner, of an upcoming scheduled meeting date. Parents must be given time to receive, read, and respond to, the required Safeguard Procedures booklet; plus, invite persons you would like to have present at any meetings. You may bring any documentation, such as your child’s Progress Reports and notes from previous pertinent meetings. To prove a point, my choice was to bring an award Sonny had received as a Little League Baseball member. This award helped me show the team that, when in the right setting and at times, he could be social and cooperative.

Hines continues – At school, there were not many areas where Ryan experienced success. But math happened to be one exception. He was scary smart when it came to numbers. My little human calculator loved everything about them. I assumed this was because numbers are orderly and predictable – unlike people.

Mostly, I didn’t want my child labeled at all. That was a big mistake on my part. Informed parents know that mostly their child has an immune system dysfunction, but you still need to call it “autism” on the IEP paperwork. By not using the term autism was hurting my son and limiting the services he could obtain. It took me some time to realize that Ryan needed to ‘qualify’ to get any services from the school district.

Aides can be specifically assigned to your child, or to the classroom. We didn’t want Ryan to become too dependent on anyone. I requested Ryan’s aide be introduced as an aide for the entire class, even though, technically, it was Ryan’s ‘label’ that paid her salary. Nobody can miss a child with autism with their noises, arm flapping, and tantrums. We were so focused on getting rid of those behaviors that we failed to recognize the things he was doing right.

< My Thoughts >             “…too dependent on anyone.”

When the district felt that Sonny needed a one-on-one aide in the classroom and that his placement was adequate, I felt brave enough to visit two other schools where I thought Sonny might be a better fit, without an aide, for ‘becoming’ all he could be. And besides, both schools had swimming pools where the students went to swim, which he would love.

Granted, we did not want a personal aide (the aide would move with the student, thus giving the classroom a bonus person), nor did he have his behaviors under control. But I guessed that he was becoming too dependent on the aide, or sat by while she did everything for him. I thought that part of his behaviors were not due to teachers demanding more of him, but of him having a day that bored him.

Finally, I convinced one of the school principals to visit him in his present classroom, in hopes to get him transferred to a more progressive program. Graciously, she agreed. But, after spending quite a bit of time observing him, she came to her conclusion – He just didn’t seem like a “Seymour School” kind of kid.

Ouch! That hurt, but it didn’t stop me. I finally convinced her to give Sonny a ‘trial six weeks’, during the Extended School Year (ESY) program. We began by rewriting more demanding IEP goals, for him to meet (which I was certain that he could do). He began the new school’s ESY program; with a wonderful teacher who decided to take him on.

To everyone’s surprise, Sonny responded to the new school environment and became a favorite among the staff. Behaviors subsided and a transfer was agreed to. Because of that change, Sonny was so much happier and began making real progress. Of course, it helped that he loved swimming in their pool.

Kedar, Ido (2012) had a lot of resentment because he had been so trapped, telling us – resentment was later exacerbated because no one initially accepted what I had to say. But this time I was not going to be deterred. I was absolutely certain that I was right, and with certainty comes the confidence to stick to your beliefs in spite of hostile pressures.

It was a very lonely time, I sat in school, learning nothing, looking at toddler books, adding single digit numbers. At home I was writing essays, doing science and multiplying and dividing double digits.

Ido’s mother tells us that until he was seven, he had no means to show anyone that he was intellectually intact. His teachers and a myriad of experts assumed, based on his difficulty following directions, lack of speech, and odd behaviors, that his intellect and knowledge matched his actions. They insisted that the only way he could learn was by being slowly and progressively instructed, with the basic information that human beings need to function.

In the fifth grade, Ido was finally removed from his remedial autism class and sent to another school with a “high functioning” autism class. He had his first opportunity to receive an actual academic education in school.

A psychologist Ido worked with asked him to share what ‘stims’ meant to him. Ido sat down and analyzed his self-stimulatory behavior. It’s beautiful to watch. It mesmerizes me. He realized that he could explain autism from the inside out, describing his symptoms and puzzling behaviors one by one. As he did, he began to better understand himself.

Many times, Ido reacted emotionally to the topic. Sometimes he hopped up, flapped his hands, or paced the room, but he always came back to complete his work or write his essay. It was emotionally difficult for him to revisit the pain and frustration of his early years, when he felt so terrified that his true intelligence might never be discovered.

< My Thoughts >             “…he felt so terrified…”

As parent and teacher, my fear is that this ‘terrifying’ scenario occurs much too often, and among many more students.

Ido explains that last week the IEP Committee determined that he would be mainstreamed all day next year – I will no longer be a special education student. I will be a general education student. This is amazing from a School District that once denied I could even communicate.

On to High School. I am not under any illusions that the school is thrilled to have a seriously disabled student. I am a challenge. I am expensive because I need an aide. But I am a student who is pioneering opportunities for the disabled too.

Some kids have kinder hearts. They say “hi” and work in groups with me and treat me well. I am starting to feel more relaxed with typical kids, so mainstreaming has made me interested in expanding my world.

< My Thoughts >       “…work in groups with me…”

When a student becomes part of an inclusion program, i.e., “mainstreamed,” they may need an afterschool tutor, or dedicated parent time at home, because of increased homework, weekly textbook chapter reading/testing, student projects, and possible sport or after-school study activities.

Keeping in mind that your student will possibly/probably take longer to do the work necessary to complete the task. You can help them by allowing plenty of completion time, in order to keep frustration at a minimum. Try using a chart/calendar or other visual reminder to facilitate the planning and implementation process.

Also, note that these students are often uniquely inspired and may take a different approach to problem solving, as well as approach a topic from a different perspective. My experience has been that everyone can learn from these new, innovative and inspired thoughts that our special students have.

Note: Visual charts, calendars, and other materials can be found in other parts of this book.

OME ABC’S OF IEP’S FOR PARENTS

Note: These ABC’s have been compiled from a variety of sources.

A. Communicate your child’s strengths, upfront. Most professionals communicate the child’s strengths first, then their needs. When parents take this same approach, it will help the school appreciate your child’s true nature. Help them see more than just your child’s diagnosis.

< My Thoughts >             “…Help them see more…”

An IEP should give a ‘snapshot’ of the child, their strengths and challenges. This information is gathered from those observing or working with them; as well as information about their test scores and the schoolwork they’ve produced.

For example, the school ‘snapshot’ may describe Sonny as an 8-year-old, diagnosed with Severe Nonverbal Autism Spectrum Disorder; Mental Age of 18 months. Due to his diagnosis, he requires a classroom aide, as well as many IEP accommodations and modifications.

As a parent, I would describe Sonny as a happy guy, who, at the age of 8-years-old, seems most like a 3-year-old. He loves to use his “Talker” to communicate his needs, and will respond to familiar cues and prompts.

B. Request don’t demand. Be an effective advocate. Ask, discuss, negotiate, and problem-solve.

< My Thoughts >             ‘Be an effective advocate.’

As a parent, letting teachers know that Sonny has a good receptive vocabulary lets me become an effective advocate for him. Having others understand that if you ask him to do something in simple terms, in words or signs he understands, he will comply.

However, there is another component to his compliance – if he does NOT see the advantage to following a direction more than once, he will walk away. In other words, sometimes he wants choices or needs to decide if the task, or repetition of the task, is worth his time.

Some students can spend time putting the same puzzle together over and over. Sonny is not one of them. So, his ‘task demands’ need to allow for that. Also, this may not be something that the ordinary teacher or instructional aide can abide from him.

C. Understand the system. What defines an ‘emergency’ for your child? Clearly define when the school nurse, emergency services, and or the parent or ‘emergency contact’ will be called.

< My Thoughts >             “…What defines an ‘emergency’…”

Sonny has a rather unusual ‘drop’ seizure disorder. Sometimes he will drop down and pop back up again, act disoriented or upset; but then he’ll continue with what he was doing. As the parent, I need to know that someone in the classroom has been trained to recognize his seizures and the medication protocol involved. This is critical in order to prevent the onset of a life-threatening Grand Mal seizure.

As a parent, I would want this ‘event’ documented by the teacher or the school nurse. If he goes into a seizure and cannot respond to ordinary measures, then a medication should be given ‘rectally’; paramedics and parents should be called. Parent and school authorities must be in agreement as to when emergency services will be called. These requests should be stipulated in all school documents.

D. Be realistic. If the school cannot meet your child’s healthcare demands, or food restriction demands, then problem-solving is required. Your child may have a peanut allergy and need to carry an epi-pen.

< My Thoughts >             “…meet your child’s healthcare demands…”

As you can understand, Sonny needs to carry a prescription rectal syringe in a fanny pack at all times for his seizures. Is that going to be a problem? Medication is usually not allowed in the classroom, but only in the school nurse’s office. Another health-related problem is that Sonny’s oral medication makes him thirsty all the time. He needs to have his Sippy cup handy or be allowed to carry and drink from a hiker’s refillable water bladder. This can cause a problem in the classroom with other students who may want him to share.

No single factor should dominate the student’s IEP placement decision; rather, all factors should receive equal consideration. The IEP team must draw upon information from a variety of sources (e.g., aptitude and achievement tests, teacher recommendations, physical conditions, social or cultural background needs; plus, accommodating for adaptive behavior).

REFERENCES: UNIT 6 CHAPTER 3 – LAW FEDERAL & STATE & LOCAL: INTRODUCTION, INDIVIDUALIZED EDUCATION PROGRAM (IEP), SOME ABC’S OF IEP’S.

Burke, M., & Goldman, S. (2015). Identifying the Associated Factors of Mediation & Due Process in Families of Students with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V45; 1345-1353.

Finkel, E. (2010). Who Let the Dogs In?; The National Pulse; V96:4.

Foley‐Nicpon, M., Assouline, S., et al. (2014). Cognitive and Academic Distinctions Between Gifted Students With Autism and Asperger Syndrome; Gifted Child Quarterly, V56:2, p77-89.

Greer, M. (2005). An Alternative IDEA; American Psychological Association; V36:4, p44. Retrieved online from – https://www.apa.org/monitor/apr05/idea/

Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.

Horoupian, G. (2011). Service Dogs In The Restaurant: Justice Department’s Rules; Retrieved online from: franchising.com/

Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.

Laurence, B. (2018). Does the Law Protect Children & Adults with Autism?; Retrieved online from – www.Lawyers.com/

Staff Writer (2017). Section 300.320 (a); Individuals with Disabilities Education Act; Retrieved online from – https://sites.ed.gov/idea/regs/b/d/300.320/a/

Staff Writer (2018). Developing Your Child’s IEP; Retrieved online from – https://www.parentcenterhub.org/pa12
Understood Team (2019). Who Is on the IEP Team?; Retrieved online from – https://www.understood.org/.../whos-on-the-iep-team/

Waterstone, M. (2014). Disability Constitutional Law; Emory Law Journal; V63:3, p527-580.

Watson, S. (2019). The Special Education Resource Room; Retrieved online from – https://www.thoughtco.com/special-education-resource-room-/

Yell, M., Katsiyannis, M., et al. (2003). Developing Legally Correct & Educationally Appropriate Programs for Students with Autism Spectrum Disorders; Focus on Autism & Other Developmental Disabilities; V18:3, p182-191.

Yen, J., Mao, A. (2011). Laws that Affect Parents Raising a Child with Autism; Brown University Child & Adolescent Behavior Letter; V27:1, p1-6.

DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023

Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.

This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.

PLEASE READ DISCLAIMER –

UNIT 6 CH 4 – Where to Look for Resources

AUTISM EDUCATION & ANTI-BULLYING POLICIES

Waterstone (2014) wants you to know that there are no Federal Laws which regard ‘autism’ and ‘bullying’, specifically. But there are Civil and Educational laws regarding harassing persons with a disability. There are also State Anti-Bullying Laws and Regulations, in each state in the United States.

There are state statutes which still expressly discriminate on the basis of mental disability, in the areas of family law, provision of Public Services, commitment proceedings, voting, and provision of public services.

These laws should require greater judicial consideration, not laws based on outmoded perceptions, stigma, and prejudice. Laws like the Americans with Disabilities Act (ADA) which have shown that people with disabilities can and should be full members of society.

Disability advocates question the ‘Equal Protection’ clause in the ADA law. Family Law Includes important areas such as, commitment proceedings, voting, and provision of public services.

Staff Writer (2017) declares that state and local lawmakers have taken action to require school districts to implement procedures, when ‘bullying’ occurs. If the persons are juveniles, then the criminal code takes over.

If the students are attending federally-funded schools, colleges, or universities, then federal laws through the U.S. Department of Justice, Civil Rights Department will apply. These laws protect students from harassment based on their non-conformity to gender stereotypes.

Prompt, impartial, and immediate action must take place. If not, and the harassment persists, then a formal grievance may be filed with the U.S. Department of Education Office for Civil Rights.

Biggs, et al. (2010) believe that children with an unsteady gait, slow movements, or less stamina, are often viewed by bullies as being weak and become the target of verbal or physical abuse. A strong emphasis should also be placed on how individuals with social deficits are at a greater risk of bullying, and therefore should be protected.

They also believe that educators should avoid elimination games—for example, games such as ‘knock out’, in which a physical skill level determines the last student remaining in the game. This type of game may single out a child for being seen as ‘weaker’ than his or her peers. Students perceived in this manner are often targets of bullying acts.

< My Thoughts >                      “…single out a child for being seen as ‘weaker’…”

Unknowingly, some teachers may seem to be condoning bullying by identifying students with physical and/or cognitive deficits, in games or competitions. Especially staff who are new or inexperienced with this ‘less abled’ population.

Kvesic (2012) lets us know that while bullying continues in traditional face-to-face-settings, a child may also be subjected to ‘cyberbullying’. This is when a child, preteen or teen is tormented, threatened, harassed, humiliated, embarrassed, or otherwise targeted by a peer, using social media on the Internet, interactive and digital technologies, or mobile phones. Where intimidation, fears of attack, and things said remotely that might never be said in person, are said in this venue.

She says that some anti-cyberbullying laws do exist, which are carefully drawn to also protect First Amendment Rights. But that each state and school district must be involved in creating, interpreting, and enforcing cyberbullying criminality laws, before laws become universal.

Barnes (2014), “Wait! What?” I dutifully go to the school office and sign in and get a badge so I am an ‘official’ visitor at the school. While I was signing in my son, Navigator walked into the office.

He was supposed to be in class, what was he doing in the office? One of the assistants asked him why he was there. He explained that he had been misbehaving in class and the teacher had sent him to the office.

“Wait! What?” There is specific language in the IEP that he is not to be sent out of the classroom for his behavior. The ‘Specials’ teacher had sent him out of the classroom. Why isn’t the ‘Specials’ teacher following the IEP?

< My Thoughts >                      “Why isn’t the ‘Special;s teacher following the IEP?”

‘Specials’ are the classtimes when all students, general education and special education, go to Library, P.E., Art, or Music class. These ‘Specials’ are scheduled daily, so as to allow the teachers their mandated lunch, break, or Teacher Preparation Time, i.e., Lesson Planning Time. ‘Specials’ are conducted by teachers state qualified, certified, and licensed in their area of expertise.

Barnes continues saying that a couple of days later she got notice that an IEP meeting had been set, which included the ‘Specials’ teacher.

Why were we having an IEP meeting? The meeting came and I learned why. The ‘Specials’ teacher had not been given notice of the relevant accommodations in the IEP related to my son. None of the ‘Specials’ teachers had been given that information. How can they do their jobs if they don’t have the information they need?

The meeting went well as far as my son is concerned. The’ Specials ‘teacher now has the knowledge and tools needed to manage my son’s behavior in the classroom. Ironically, this meeting took place on the second to last day of Autism Awareness Month.

< My Thoughts >                       “None of the Specials teachers had been given that information.

One of my mottos is never to assume anything! As parents and as teachers, immersed in the world of autism, we sometimes tend to ‘assume’ that everyone out there is as ‘consumed’ with our student’s needs as we are. That ‘they’ are operating from the same knowledge base that we are. Not so! And, many people prefer not to think about anything that deviates from the ‘norm’, especially when it comes to ‘autism’. A sensitive child could perceive this as being ‘harassed’ by a general education teacher, because unwarranted attention was drawn to them.

Barnes concludes – set up a preferred method of communication so the school can contact you. Setting up a preferred method puts the teacher-parent relationship on a ‘respectful footing’ for what works best for both.

Special Education teachers, when writing an IEP are expected to create a legal document which describes how the student performs educationally. Creating a picture of their strengths and deficits. Many create a ‘strengths-based’ IEP. This type of IEP helps students make progress by leveraging what they’re good at. See how your child’s IEP goals can be ‘strengths-based’, too.

< My Thoughts >                       “…‘respectful footing’…”

‘Strength-based’ IEP goals can present the student on a ‘respectful footing’. There is so much that’s ‘subtle’ about preventing a child from becoming harassed and/or bullied by his/her peers.

UNIT 6 CHAPTER 4 – FAMILY LAW, LAW ENFORCEMENT

Byrd, et al. (2013) raise the point that research has demonstrated “immense” adverse impacts on the family of an autistic child. This includes increased levels of parenting stress, higher levels of health concerns, decreased family quality of life, and an increase in problems within sibling and marital relationships. The impact of autism within a family is often felt long before any formal diagnosis is received.

Autism diagnosis is not the prognosis for divorce, they say, but the negative effects on parents and it’s competing demands often result in just that, divorce. And, especially a higher level of dysfunction in the family, seems to correlate directly with a lower support level from the less involved spouse.

Autism leaves few, if any, ‘conflict-free spheres of functioning’ family life, but may result in visits to family court. Routine structure, and scheduling are important to reduce anxiety, and the prognosis for divorce. Parents may be divided – one to their autistic child’s best interests, and the other to his/her self, and self-interests.

Families with autism often find themselves unhappy; missing many social opportunities and even becoming isolated, due to their child’s –

Inappropriate eating
Toileting complications
Sexual expressions
Social difficulties
Sensory overload

Community isolation is often heightened by the unpredictable behavior of the child with autism. Parents also miss opportunities to follow career paths, because of the demands they are feeling to provide established insurance for medical care, as well as the ability to have family leave, and care for neurotypical siblings.

Note: More about ‘unpredictable behavior’ in UNIT 4.

Miles (2013) mystified exclaimed, “Our beautiful boy couldn’t talk, wouldn’t make eye contact, and was frequently inconsolable.”

It was a constant struggle to simply get through the day. Ben still wasn’t sleeping with any regularity, and when he was awake, he was like the Energizer Bunny – just going, and going, and going…

I began to sink into depression and the cracks in our marriage grew. It was a matter of “too much, too soon” for a relationship that had not had enough time to build any real foundation.

One year later, our marriage was over. Despite the failure of our marriage, Sara and I did go on to build a very successful parenting relationship.

We had a standard court-ordered parenting plan. We fell into the rhythm of our son Ben being with his mom during the week and with me on weekends.

Although Ben was completely non-verbal, he was happy and affectionate, and it was clear that he felt completely loved and supported despite his fractured household.

Sicilie-Kira (2015) says that she has added to her list of people who need practical knowledge about autism, when it comes to Matrimonial Settlement Agreements. The list, ‘with all due respect’, she says, is as follows –

Many attorneys
Many judges
Many family court counselors
Many custody evaluators

The court system is there to ‘serve the needs’ of the child, but how is that possible when they do not understand what the autistic child’s needs are. Their needs are for routine, structure, and stability. Not being shuffled from one parent to the other in a 50/50 custody settlement.

She continues that the court system is there to serve the ‘best interests’ of the child, not the parent who may have no interest or experience with the child. Not one who doesn’t understand that autism becomes more difficult as the child gets older.

Note: More about the adult with autism in UNIT 6 Chapter 5.

Green (2013), in her review of various articles regarding family wellbeing, discovered that much of the literature brings up the ‘invisibility’ of autism. Families seem to know long-term stress and anxiety, due to experiencing society’s speculation that autism, the ‘invisible disability’, is not a ‘real’ disability, but an unruly child who is just undisciplined.

Laurence (2018) lets us know that there is no cure for autism. That most legislation to provide health insurance coverage for the diagnosis, testing, and treatment of autism is available, according to the law. But these laws may have Medicaid Waiver limitations. And, a child may not have received the correct diagnosis allowing insurance to pay for an appropriate service, nor will they qualify for ‘special’ school participation.

She indicates that there are state ‘restraint’ and ‘seclusion’ laws in place, pertaining to schools. Laws preventing a child from being restrained from movement by straps, and/or belts; or, from being secluded, or locked in a room or enclosure. These laws are enforced by advocacy agencies in every state. Visit your State’s National Disability Rights Network.

Cea (2014) believes that ‘The distinction between autism and an intellectual disability’ is crucial for a criminal defendant. This is because a court may better recognize an intellectual disability in the context of the insanity defense. Awareness of the legal community and the criminal justice system may find ways to integrate the ‘autism factor’ into the federal sentencing guidelines. This ‘factor’ could include the diagnostic criterion for ASD.

This study author gives an example of a criminal acts stemming from an obsession/special interest, for instance, was a person who stole computers in order to disassemble them. Thus, fueling his passion for seeing what was inside the device. Other factors which may predispose those with ASD to seemingly criminal behaviors would be aggressive behavior, poor social understanding, stress or anxiety from disruption of routines or perceived threatening events.

< My Thoughts > “…seemingly criminal behaviors…”

Other factors which may predispose those with ASD to seemingly criminal behaviors can be seen in the educational setting. Students have attacked me physically with a chair, and verbally with foul language This makes me realize that any onlooker could believe that a crime was being committed. Persons with autism may have ‘lack of impulse control’, occasionally physically striking out or grabbing someone inappropriately. Some may even engage in disruptive actions which continue over and over, due to their need for perseveration.

UNIT 6 CHAPTER 4 – JUDGES & THE COURT SYSTEM

JUDGES & THE COURT SYSTEM

Birt (2019) believes that all too often, people making decisions about parenting ability in the courtroom, have no experience with parenting a child with autism. Yet, parenting ability may be put under the microscope by attorneys, judges, and forensic evaluators. Even court appointed attorneys are unfamiliar with safety issues, medical terminology, therapies, and/or educational issues.

In addition, there are issues which involve siblings who are not autistic. There are medical issues, such as, vaccination exemptions, or alternative biomedical treatments, and reports of abuse and neglect to Child Protective Services (CPS). Reports from persons who do not have knowledge of laws regarding rights of parents to make treatment decisions for their autistic children.

< My Thoughts >   “…parenting ability…”

The focus here would be ‘parenting abilities’ under the microscope, in the courtroom, when parents of children with autism are petitioning for separation or divorce. Court decisions, involving professionals with a great deal of experience in mediating and resolving issues of ‘typical’ families with ‘typical’ issues. Without an understanding of autism, a neglect or abuse report from CPS may keep the ‘right’ parent from obtaining custody, if all the facts were not investigated by the ‘right’ person. Such as a person knowledgeable about autism parenting.

Note: More about ‘alternative biomedical treatments’ in UNIT 7.

Janai (2020) justifies autism as having a genetic component. Therefore, a mixed-neurological marriage, between a typically a developing person and a person who has autism, may have children with autism. Many persons with ‘high-functioning’ autism, formally known as Asperger’s, considered to be without language or intellectual impairment, are never diagnosed. Couples who marry without knowledge that one of them is on the spectrum, often find trouble with social interactions and communication. Even more so than typical marrieds, these unresolved conflicts may lead to domestic abuse, due to ‘theory of mind’ deficits.

Partners without ‘theory of mind’ cannot take the other person’s perspective into account, especially when discussing marital conflicts. Laws designed to prevent conflict can protect vulnerable families. For example, ‘no fault’ divorce and equitable financial settlements should resolve the ‘high-conflict’ divorce proceedings. But sometimes, an attorney unfamiliar with autism, may unknowingly exploit these families. Determining the appropriate parent to be awarded custody of the children, and the parent to play an active role in parenting, should be done by someone who has considerable experience with these matters.

< My Thoughts >   “…exploit these families.”

Attorney exploitation may come as a result of not understanding why the parties cannot agree on one single thing that comes up for discussion. When one does not have empathy, nor a consideration of the other person’s viewpoint, due to lack of ‘theory of mind’, then the situation becomes impossible to resolve without numerous costly meetings. Of course, couples must reach some sort of agreement before meeting with the judge.

Note: More about ‘theory of mind’(ToM) in UNIT 3 Chapter 3.

Potvin (2013) tells us about his very young daughter, Andrea – The TV was on, tuned to Andrea’s favorite show. I took another sip of coffee. It was still too quiet. I searched for Andrea, but she was not watching TV. She was not in her room either. I searched frantically, but no Andrea.

I went to the front door; it was wide open. The keys were in the lock. I knew Andrea had escaped.

Out in the street, cars swerved to avoid the kid in the diaper. Brakes were slammed, tires squealed. Andrea remained focused on the library. The darkness camouflaged her. The white diaper was the only warning to hurried drivers.

I had to find Andrea.

Just then, the police car pulled in my driveway with lights flashing. I ran outside and up to the police car. The officer asked if the little girl in back belonged to me. “Yes”, I stammered.

The officer said I had the neighbor to thank for Andrea’s pants and blanket that I didn’t recognize. I explained about the autism. I had the officer to thank for saving her life. Andrea was safe due to his swift reaction.

< My Thoughts >                       “…I had the officer to thank…”

Fortunately, this family was not under the court’s microscope in a custody battle. Potvin’s loss of his daughter, the neighbor’s involvement, and eventually having his daughter brought home by the police, would be very suspect to ‘neglect’. Especially, under normal circumstances, parental neglect or irresponsibility could be seen as a concern. Perhaps, even resulting in a referral to Child Protective Services (CPS).

In a ‘fictional’ story about 15-year-old Christopher, with ‘high functioning autism’ (HFA), Haddon (2003) writes about his main character, Christopher – The police arrived. I like the police. They have uniforms and numbers and you know what they are meant to be doing. There was a policewoman and a policeman.

The policewoman put her arms round Mrs. Shears and led her back toward the house. I lifted my head off the grass.

The policeman squatted down beside me and said, “Would you like to tell me what’s going on here, young man?”

I sat up and said, “The dog is dead.” “And why were you holding the dog?” he asked. “I like dogs,” I said. “Did you kill the dog?” he asked. He was asking too many questions and he was asking them too quickly. They were stacking up in my head like loaves in the factory where Uncle Terry works.

< My Thoughts >    “…asking too many questions…”

Rapid-fire questions, especially in a stressful setting, become – questions stacking up in one’s head like loaves in the factory where Uncle Terry works.

The policeman took hold of my arm and lifted me onto my feet. I didn’t like him touching me like this. And this is when I hit him.

< My Thoughts >                              “And this is when I hit him.”

Children with tactile, fight or flight, PTSD, or other sensory issues, often present in children with autism, can react quickly and/or defensively when touched or when someone comes within close proximity.

Sicile-Kira (2014) says that a typical characteristic of children with autism is to become stiff when held, and uncomfortable when being touched. “This indicates that their ‘tactile’ sense is out of whack.”

She tells us that when interviewing well-known autistic, Temple Grandin she learned that – “From as far back as I can remember, I always hated to be hugged, it was just too overwhelming. Being touched triggered flight, it flipped my circuit breaker. I was overloaded and would have to escape, often by jerking away suddenly,” (from Temple Grandin, Thinking in Pictures).

Almanza (2014) also quoted Temple Grandin who despised ‘hugging’ and saying that she designed a “squeeze machine” in her head to artificially suppress sensory overload. The famous machine allowed the user to experience deep pressure on both sides of the body, in order to relax; thus, controlling her neurosensory experiences.

Haddon (2003) continues – The policeman looked at me for a while without speaking. Then he said, “Christopher, I am arresting you for assaulting a police officer.”

This made me feel a lot calmer because it is what policemen say on television and in films. Then he said, “I strongly advise you to get into the back of the police car, because if you try any of that funny business again, I will seriously lose my rag. Is that understood?”

< My Thoughts >                       “…if you try any of that funny business again…”

A perfect example of how ‘invisible disability’ might lead to the arrest of a person with autism. And one of why the parent will need ‘proof of guardianship’ to access this person who has been taken into custody.

According to Frekelton (2013) Autism Spectrum Disorder, as defined in The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5) can help clarify family, disciplinary, discrimination, and criminal law contexts. He stresses that insights into the behavior, and the purpose of the behavior, are crucial when it comes to interpretation by law enforcement, or the courts. This will require the help of experts to make a connection between conduct, capabilities, and skills when it comes to making criminal conduct decisions about persons on the autism spectrum.

Berryessa (2016) tells us that a study of fifteen judges showed that knowing an ‘offender’ has High Functioning Autism (HFA) would be an important factor in sentencing them. If judges, juries, and other criminal justice professionals understand that possibly the offenders condition led to ‘committing criminal actions’ then it could be considered as ‘mitigating’ or ‘aggregating’ circumstances. Rather than focusing on traditional sentencing, they could order assistance, therapy or treatment for these offenders.

Some judges believed that ‘impulse control’ problems will lead to future offenses. One judge stated that he thought it should help to put the whole picture into perspective. This study showed that the majority of judges would rather order sentencing alternatives than to send the person with HFA to prison. While yet other judges felt that the courts didn’t yet have the formal tools to change sentencing outcomes.

< My Thoughts >                       “…’impulse control’…”

Some with autism need immediate gratification, due to an undeveloped, or underdeveloped ‘executive functioning’ part of the brain. Persons with ‘impulse control’, and/or lack of ‘theory of mind’, plus cognitive issues may result in future involvement with the police, and possibly with the criminal justice system.

Typical human brain cognition behavior allows us to process a great variety of complex information all at once. Minshew & Goldstein (1998) believe when there is a potential deficit in this behavior, individuals with autism often have difficulties with increasing the number of cognitive processes needed for task performance.’ Another common feature of their cognitive processing is with difficulty in organizing information, especially as the information becomes increasingly more complex; or, is delivered more rapidly.

Realmuto & Ruble (1999) warn that “individuals with autism are at great risk for negative consequences and/or punishment with any display of sexual behavior. Public displays of sexual behavior such as removing clothes or touching private parts, in times of stress. Due to confusion as to the nature of this behavior, and initially considering the behavior to be ‘deviant’; consequences have been known to include loss of employment, loss of public transportation riding privileges, and even loss of placement in some residential settings.

Wright (2019) says many people with autism can drive. But when pulled over in traffic, they may be slow to answer, unsteady or slurring their words. A person who won’t look you in the eye, who might be unsteady on their feet, agitated or pacing–police often tend to take these as signs of guilt, or at least of being under the influence of drugs. Officers learned that if they don’t smell alcohol, it’s okay to ask directly, “Do you have autism?”, said Chief Deputy Scowden. It’s fine for the officer to ask people if they are autistic. It can save a lot of misunderstanding.”

Police today are being trained to look for signs of Autism. Also, to check for bracelets or tags which may give necessary information about the person’s serious medical condition. Many children with autism also have epilepsy and sensory issues. Heat, sound and bright lights can trigger both seizures and panic attacks.

Persons with Autism exhibit these unusual behaviors and often try to run, may spin, rock, run around and may seem to be in pain. Some laugh, hum, sing, remove clothing, or refuse to be touched. Often times, both children and adults with autism do not comprehend pain or danger. Speaking to them in clear one or two word, easy to process commands may work best in this situation. Make certain to pass any information on to those who may be transporting the person to another place.

Haddon (2003) has an example – When I got to the police station, they made me take the laces out of my shoes and empty my pockets at the front desk in case I had anything in them that I could kill myself or escape or attack a policeman with. I was also wearing my watch and they wanted me to leave this at the desk as well but I said that I needed to keep my watch on because I needed to know exactly what time it was. And when they tried to take it off me, I screamed, so they let me keep it on.

< My Thoughts >                              “…so they let me keep it on.”

Most parents experience relenting when any of their children, at any age, persevere on any subject until any sense of parental order collapses. And, ‘perseverance’ can be the number one coping skill with the person with autism.

Charlop-Christy & Haymes (1998) state that often the child will tantrum when the object of the child’s obsession is withdrawn or they are given only limited possession. Also, that there is an ‘immediate reversal of undesirable behavior when the object of the child’s obsession is returned.’

Roa & Gagie (2006) remind us that digital clocks and watches, Visual Schedules and calendars are also tools which help older children have the structure allowing them better social functioning. With many children the passing of time is an abstract idea; whereas concrete thinking and objects are factual. Therefore, the passing of time requires ‘abstract’ thinking and telling time on a watch or clock requires factual thought. Visual strategies, like visually keeping track of the time, help persons with autism stay centered, communicate appropriately and have more positive behavior. This also allows them to focus and helps to reduce their anxiety.

Vogel, et al. (2918) acquired the volunteered data from 26 adults with autism, who experienced deficits in social interaction, due to repetition or insistence on sameness.

The uniqueness of this study is that the researchers were interested in the ‘disruption’ of time on the participants. They were interested in how the effects of ‘disturbed neuronal timing’ changed ‘time perception’, ‘time production’, and ‘time experience’; thus, causing an interrupted ‘time experience’. An impaired perception of time, somehow changes the factual experience of ‘time’.

When adults with autism have an experience, which in prior times has taken a certain amount of time to be completed, but is now somehow disrupted, then it can become extremely disturbing to that individual. One of the reasons, researchers considered, was that persons with autism may have either a heightened, or decreased sense of time; this decrease is referred to as ‘hypo prior’. A link between the ‘time’ experience and the observation of ‘change’, or disturbance, is exacerbated by an increased or decreased detailed perception; creating a focused sense of change. This change, in turn, creates a neural disruption and the need for sameness.

< My Thoughts >             “…need for sameness’.”

Some consider this to be a ‘novel’ hypothesis. But if you tell Sonny that we are going to McDonald’s for French fries, but you stop for gas on the way, then you can expect he will be banging his head on the window until we continue on our way. Now it makes sense that it is more about ‘time disruption’ than about where we stopped, or what we are doing. He’s not upset because he can’t wait to get his soda and French fries, but it’s more about the disruption in time involved in traveling from point A to point B. He needs ‘sameness’, and when he compares this trip to previous trips, it is not the same.

Note: Visual Schedules available in the book.

REFERENCES: UNIT 6 CHAPTER 4 – FAMILY LAW, LAW ENFORCEMENT, JUDGES & THE COURT SYSTEM

Almanza, A., Rapp, J., et al. (2013). Parents' Experiences of Applied Behavior Analysis (ABA); British Journal of Special Education; V40:4.

Barnes, E. (2014). Building in Circles: The Best of Autism Mom; eBook Edition.

Berryessa, C. (2016). Brief Report: Judicial Attitudes Regarding the Sentencing of Offenders with High Function Autism; Journal of Autism & Developmental Disorders; V46; 2770-2773.

Biggs, G., Simpson, M., et al. (2010). Using a Team Approach to Address Bullying of Students with Asperger’s Syndrome in Activity-based Settings; Children & Schools; V32:3.

Birt, E. (2019). Autism Law & Advocacy; Elizabeth Birt Center for Autism Law & Advocacy; Retrieved online from – www.ebcala.org/areas-of-law/family-law/

Byrd, K. & Payne, R. (2013). Lighting-Up Family Law in Blue: Autism’s Impact on the Family & Family Law; Retrieved online from – www.theneurotypical.com/divorce-and-the-law-related-to-asd.html/

Cea, C. (2014). Autism & the Criminal Defendant; St. John’s Law Review; Summer V88, p496-529.

Charlop-Christy, M. & Haymes, L. (1998). Using Objects of Obsession as Token Reinforcers for Children with Autism; Journal of Autism & Developmental Disorders; V28, p189-199.

Freckelton, I. (2013). Autism Spectrum Disorder: Forensic Issues & Challenges for Mental Health Professionals & Courts; Journal of Applied Research in Intellectual Disabilities; V26, p420-434.

Green, L. (2013). The Well-Being of Siblings of Individuals with Autism; ISRN Neurology; V:2013; Art. 417194.

Haddon, M. (2003). Curious Incident of the Dog in the Night-time; eBook Edition.

Janai, A. (2020). For Court Professionals; Autism & Family Law – Real Mixed-Neurological; Retrieved online from –   https://mixedneurological.com/wp-content/uploads/

Kvesic, C. (2012). Cyberbullying: The Face of 21st Century Bullying; Christian Post; www.christianpost.com/

Laurence, B. (2018). Does the Law Protect Children &Adults with Autism?; Retrieved online from – www.lawyers.com/legal-info/family-law/

Miles, R. (2013). 3500: An Autistic Boy’s Ten-Year Romance with Snow White; eBook Edition.

Minshew, N. & Goldstein, G. (1998). Autism as a Disorder of Complex Information Processing; Mental Retardation & Developmental Disabilities Research Reviews; V4, p129-136.

Potvin, J. (2013). Autism Triple Twist: Survival Stories of Parents, Triplets & Autism; eBook Edition.

Realmuto, G. & Ruble, A. (1999). Sexual Behaviors in Autism: Problems of Definition & Management; Journal of Autism & Developmental Discord; V29:2, p121-129.

Roa, S., & Gagie, B. (2006). Learning Through Seeing & Doing: Visual Supports for Children with Autism; Teaching Exceptional Children; V38, p26-33.

Sicile-Kira, C. (2014). Autism Spectrum Disorder (Revised): The Complete Guide to Understanding Autism; New York, N, Y,: Penguin Random House Company.

Staff Writer (2019). Laws, Policies, & Regulations: Stop Bullying.gov; Retrieved online from – https://.stopbullying.gov/resources/laws/

Vogel, D., Falter-Wagner C. F., et al. (2018). Interrupted Time Experienced in Autism Spectrum Disorder: Empirical Evidence from Content Analysis; Journal of Autism & Developmental Disorders; V49, p22-33.

Waterstone, M. (2014). Disability Constitutional Law; Emory Law Journal; V63:3, p527-580.

Wright, D. (2019). First responders learn how to recognize Autism Spectrum Disorder; Retrieved online from – https://www.wtrf.com/news/local-news/first-responders-learn-how-to-recognize-autism-spectrum-disorder/

UNIT 6 CH 5 – Where to Look for Resources?

CHAPTER 5 – FUTURE CHALLENGES
  INTRODUCTION
COLLEGE
CAREER
          FORTY SOMETHING  (Older adult)
          GERIATRICS  (Resources & get on ‘waiting lists’, Finances. Individual’s Insurance, Health Care,
  Colleges, Adult Day Care, Adult Group Homes, Assisted Living, Nursing Facilities, Hospice/Palliative.)

COLLEGE

Parents who when kids with autism grow up, struggle to find, or invent, good supported living options whose children were among the first wave diagnosed with autism. Arky (2018) interviewed several families in this very situation. ,As well as those families with younger children, who see the future fast approaching. Parents who are confronting new challenges for their kids’ upcoming adulthood. At age 21 or 22, depending on the state, all the educational supports and services they have been receiving, under the federal Individuals with Disabilities Education Act (IDEA), will vanish.

This forced transition, called ‘aging out’. ‘Aging out’ of services pushes students with special needs into the woefully lacking system for disabled adults. And, it’s not just those with more severely disabled children who are worried. Parents whose children are termed ‘high-functioning’, including those with an Asperger’s diagnosis, have reason to be concerned. Their kids—who may be dealing with things like ADHD, anxiety and sensory issues, in addition to their social and communication delays—are not going to magically stop needing support after they reach a certain chronological age.

< My Thoughts >       “…‘Aging out’ of services…”

Information regarding ‘Aging Out’ of the Social Security Disability System, can be found online for citizens of the United States. There are also International Social Security Program which may be of assistance, for disabled persons globally.

Arky interviewed one mom, Susan Senator, whose son Max was racing toward the high school finish line, he joined the rest of his classmates for the usual rites of passage. He took the ACT and applied to good schools, landing at New York University’s prestigious NYU Tisch School of the Arts.

But things couldn’t have been more different for Max’s brother, Nat. Her profoundly autistic older son, is very competent when it comes to self-help skills like showering and dressing. But he is limited verbally, cannot handle money, and still doesn’t look both ways when crossing the street.

In other words, she knew he needed a 24-hour caregiver to be safe. But this type of infrastructure and services weren’t in place to create the type of living arrangement she wanted for Nat, after he came of age. She joined the growing ranks of parents who are struggling to make short-term and long-term provisions; often taking matters into their own hands.

Arky’s next interviewee, was Liane Kupferberg Carter, whose autistic son Mickey turns 20 in July. Carter, who has written much about the challenges of raising a child on the spectrum, admits to floundering. I don’t know how to do this, she says. When our son Jonathan was preparing to leave home for college, we had a whole shelf of books to guide our family.

She finds that there’s no such book guiding her verbal but cognitively challenged son, Mickey; diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). As she faces the next step, we’re making it up as we go, she says. Carter is certain of only one thing, Mickey is a funny guy, he likes to ‘camp it up’ in a pair of Groucho Marx glasses, making people laugh. But, due to his cognitive challenges and autism-related epilepsy, which is only partially controlled by medication, he will always need a supervised living situation. as he faces the future.

< My Thoughts >       “…(PDD-NOS).”

This was a diagnosis given for those who did not meet the full ASD spectrum criteria. It is now accepted as autism, in the DSM-5 criteria for those with impairment in communication; or those having stereotypical behavior, interests, and/or activities.

Rudy (2018) writes that parents want to know – “Will my autistic child grow up to lead a normal life?” Not only does this question plague parents, but it can also become a mantra for grandparents, friends, and extended family. "When will he stop acting that way?” “Will he ever be able to live on his own?"

Hopefully, through ‘future planning’, discussions with guidance counselors and financial planners can begin. By age 14, through the Individual Education Plan (IEP) process, one can begin ‘transition’ planning. Planning, such as, transition to new placements, and applications to state and federal agencies.

Note: More about IEP in UNIT 6 CH 5

Sicile-Kira, C. (2014) says that some people on the ‘more able’ end of the spectrum have found the college or university environment a comfortable place for them to learn and even work. Now there are so many opportunities to get an education by combining ‘brick & mortar’, and an ‘online’ settings, to achieve various degrees.

That regardless of the ability level of the individual, the person’s own preferences should be taken into account, and there are ways of trying to figure out what is important to even the least communicative of individuals. The adult with ASD needs to develop strategies to be a good employee. Good coaches will be needed to help put strategies in place to help those with inappropriate behaviors learn to keep them in the workplace.

< My Thoughts >       “…college or university environment…”

There are states which have colleges with Special Education Departments providing Special Programs and Services, in accordance with the Individuals with Disabilities Education Act (IDEA).

Note: More about IDEA in UNIT 6, Chapter 3.

Foley‐Nicpon & Assouline (2014) clarify that having ‘accommodations’ for a ‘disability’ in an academic setting is typically based on federal legislation, such as the 1990 Federal Education Law – Individuals with Disabilities Education Act (IDEA), which include students identified with Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), and Specific Learning Disabilities (SLD). Twice-Exceptional (TE) students can be verbal or non-verbal, but show exceptional reasoning abilities and may have high performance skills in math and/or reading. These same students most often have difficulties with personal characteristics, but have increased success in a supportive environment where their needs are accommodated. In environments where many of their classmates will have come from an Advanced Placement (AP), college-like course curriculum.

Gardner (2013) marvels, I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!

Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.

With daughter Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most. He needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.

Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.

They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task.

That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.

Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.

< My Thoughts >       “…Tourette’s Syndrome.”

Retrieved from: www.cedars-sinai.edu Tourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.

“Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”

“Dale, go to Glynhill nursery – just to get your progress reports. I guarantee, you will NOT be going back to college or Glynhill until we meet with your trainer to sort this mess out!”

What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?

What we found out was that they thought Dale was not working at a satisfactory level. It wasn’t Dale’s failure, but the college’s failure to make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.

A few days later, an upbeat Dale casually mentioned a strange quirk of fate. Joyce, his trainer from fifteen years ago, was newly qualified to work at Glynhill nursery. She could see how far he had come. Her ability to evaluate Dale’s practical tasks, both constructively and with respect for his autism, allowed him to learn and to grow in confidence.

Dale thrived under the new plan, plus some unanticipated ‘additional support’.

The first apology we received was lost on us. “We didn’t think anyone would have taken the job.” All the director’s energies were directed at defending his staff. A few days later, we received a letter confirming an action plan, which would allow Dale to complete his course. Dale would have access to the College Supported Learning Department. They agreed to make reasonable adjustments, and to ensure inclusion.

< My Thoughts >   “To make reasonable adjustments…”

If there is an indication that a student may have a disability that is impacting on their studies, there may be the requirement to undertake reasonable adjustments. Reasonable adjustments also address employee needs, allowing for the individual’s strengths and abilities; plus providing –

retraining or offering alternative tasks
longer supported training periods
more time off for rehabilitation, as needed
additional breaks, as needed
changing inaccessible areas, as needed
relocating work area to address sensory needs

Wentz, et al. (2012) explored the idea of using technology to help support adolescents and young adults with ADHD and autism disorders, in employment and educational settings. The idea was based on the concept that it would be easier to get additional support from a coach in an online ‘Chat Room’ setting which could be accessed during the day between the hours of 2 – 4pm.

Because the traditional ‘face-to-face’ communication is difficult for most individuals, a computer-mediated communication from one’s home was thought to be an easier facilitation of support. The coaches available during this time period were either clinical psychologists or educational therapists with the common denominator of having vast experience with this population.

The participants could also fill out a survey to help them more clearly define the problem they needed help with. For instance, they could answer ‘yes’ or ‘no’ or rate the problem from a high 10 to a low 1. Some of the choices were. “Did you know enough today to help you with your difficulties?” “Did you feel prepared today?” “Does your coach recognize and respond to you when you are having a problem?” “How did you feel today when demands were being put upon you?”

Wentz continues saying that some of the problems with this form of support were voiced from the participants, such as – Don’t always have access to the computer during the timeframe of 2 – 4pm. Others said that no significant improvement in ‘quality of life’ was achieved for several weeks (not immediate enough). There were those who wished they could talk to the same ‘coach’ instead of possibly getting a different one each time.

Several said that they didn’t know enough about their ‘difficulty’ to express themselves clearly to the coach; that the questionnaire didn’t provide a way to identify the problem to their satisfaction. At the end of the program though, most felt they had greater self-esteem because of the chat room experience.

This was not a luxury but a ‘right’. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.

Joyce’s input was life-changing. Now, with benefits in place, and with her support, Dale had a decent income for college. The next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.

Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.

Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.

Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or NO autism!

CAREER

Many parents of children with autism hope that they will one day become a somewhat ‘normal’ adults with autism.

Rudy (2018) – What do you mean by normal? A fast-shrinking number of ‘everyday’ people actually have a full-time job with a pension, heterosexual marriage, 2.5 kids, and a mortgaged house in the suburbs.

Young adults are moving in with their parents. Older adults are moving in with their children. Homosexual marriage is now the law of the land. Many couples live together without marriage. Jobs are not guaranteed, and pensions are nearly extinct. Virtual jobs, temporary jobs, contracting jobs, and commission jobs are more and more common. So, which form of ‘normal’ might be right for your autistic child?

< My Thoughts >          “…which form of ‘normal’…”

Today’s ‘new normal’ can be most anything which allows a modicum of happiness and independence. Parents live with their children or other family. Adult children live with their parents after circumstance’s change. Jobs and education both can be ‘brick & mortar’ and/or ‘virtual, in many or most areas in the world. In some cases for an adult in the autistic world this generalization makes it easier, for some more difficult.

Rudy resumes with the question – What do you mean by grown up? In Jewish tradition, a child is considered an adult at age 13. Many opportunities open up to teens at age 16. Young adults can join the military at age 18. Drinking is legal at 21. The IDEA disability law provides services to young adults with autism until their 22nd birthday. Yet many young Americans, even those who have no particular challenges, rely on their parents for funds, housing, and moral support well into their 20's or even longer. People with autism are, by definition, developmentally delayed. In many cases, they will never ‘catch up’. In other cases, however, time and training does make a real difference in functional ability.

< My Thoughts >                    “…until their 22nd birthday …”

The IDEA disability law provides services to young adults with autism, until their 22nd birthday. In my experience, seeing IEP’s from other schools, districts, counties, and states, each IEP seems to express extreme differences in the ‘age’ equation. The key seems to be in the ‘interpretation’ of the wording, ‘until their 22nd birthday’, as to determining when a student’s services ‘end’.

This determination of the IDEA wording seems to be made by the individual states, and/or even by individual county school districts. Services may end on the exact day you become 22 years old. Or, they may end within a few months before their birthday; if it means the school won’t have to provide ‘Extended School Year (ESY) services over summer. Or, if the student’s birthday is within the first quarter of the next school year, services may even be terminated at the end of the prior school year.

There are other ‘age rules’ which apply; such as if the child ‘graduates’ before age 22. In other words, goals on the basis of the IEP, may be written for ‘post’ educational levels, beyond high school. When in question, local ‘Wrights Law’, or other special education law advocacy groups, or attorneys, may be of assistance, and can even allow pro-bono consultations. Through ‘due process’, parents can challenge any of these rulings.

After becoming a 22-year-old, our Sonny’s legal description, in most documents became. an ‘adult-child’ with profound autism. Also, some agencies require parents to become their adult-child’s ‘guardian’, before their 22nd birthday’; or possibly younger.

Note: More about ‘guardianship’ in this UNIT: APPENDIX; ‘Due Process’ in IEP, UNIT 6 CH 3

Rudy ends with – There is a common belief among Americans that adult individuals should be able to manage every detail of their lives alone, without support. Of course, very few people actually manage their lives ‘independently’. Married people share the burden. People with money hire others to do a good portion of the work. Single people ask friends and family for help. Many typically developing people fail to manage the huge list of to-dos and, as a result, wind up in debt, living in a dump, or failing to care for their own health needs. Do we expect, or even WANT adults with autism to become absolutely independent? Or should we assume that they, like everyone else, will need advice and support?

Arky (2018) Laura Shumaker is another parent who has successfully transitioned her autistic son, Matthew, whose childhood and adolescence she recounts in her memoir A Regular Guy: Growing Up With Autism. Matthew, now 25, lives in the Camphill Community in Santa Cruz, a supported living program Shumaker describes as “flexible and dynamic.”

Matthew has been in a day program with social skills help, volunteer work and vocational training outside of Camphill. But he is soon transitioning to the two days’ a week job training for garden/landscape work, and three days’ a week work with a job coach. “We are also building social activities into his program,” Shumaker says.

The program is funded through the nonprofit Regional Center of California, but given the state’s budgetary problems, the family needs to make a sizable donation each year. Meanwhile, some parents of young children are already researching options. One parent has put her son on a waiting list for state housing but is thinking the ideal immediate plan will involve a part-time job with a good day program.

Findlaw Writers (2018) feel that those persons having mental, physical, or other incapacities, which are severe or prolonged conditions, then Guardianship should be considered. This becomes a legal tool to help the ‘disabled’ persons make medical and educational decisions; as well as, representing them when entering into any ‘necessary’ services or treatments. If the person with disability, due to their condition, has a conflict or legal concern which they cannot adequately represent themselves, and they are without a ‘durable power of attorney’, then the court will appoint a guardian to speak for them.

< My Thoughts >                       “…Guardianship…”

The subject of ‘Guardianship’ may come up as the child with a disability becomes older. Or, when the parents of this child begin aging. The concern of the state is, who will speak for this person, in place of their parents, when the child, or adult-child can no longer do so. This is not considered a ‘caregiving’ concern, but a legal one, such as who will be the qualified and ‘responsible’ legal representative to ‘step-in’ for the parents, should they become incapacitated or deceased. Also, we learned that persons with a disability, no matter what age, may need a ‘legal guardian’ to sign for the most ordinary procedures or events. A legal guardian can go where a ‘parent’ cannot. When, and only then, is it ‘lawful’.

REFERENCES: UNIT 6 FUTURE CHALLENGES – COLLEGE, CAREER

Arky, B. (2018). Aging Out: When Kids with Autism Grow Up; Retrieved online from –
https://childmind.org/article/aging-out-when-kids-with-autism-grow-up/

Bowler, D., Galgg, S., et al. (2015). Brief Report: The Role of Task Support in the Spatial and Temporal Source Memory of Adults with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V45, p.2613-2317.

Findlaw Writers (2018). Guardianship of Incapacitated or Disabled Persons; FindLaw Retrieved online from – www.findlaw.com/family/guardianship/

Foley‐Nicpon, et al. (2014). Cognitive and Academic Distinctions Between Gifted Students With Autism and Asperger Syndrome; Gifted Child Quarterly, V56:2, p77-89.

Gardner, N. (2013). All Because of Henry; eBook Edition.

Rudy, L. (2018). Will My Autistic Child Lead a Normal Life?; Retrieved online from – https://www.verywellhealth.com/autistic-child-normal-life-260435/

Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; Penguin Random House Company; New York, N.Y.

Wentz, E., Nyden, A., et al. (2012). Development of an Internet-based Support & Coaching Model for Adolescents & Young Adults with ADHD and ASD; A Pilot Study; Journal of Early Child & Adolescent Psychiatry; V:21, p611-622.

UNIT 6 FUTURE CHALLENGES – OLDER ADULT (a. 40 Something, b. Geriatric)

OLDER ADULT

Jones (2016) shares – My goal was to write something every day in April (Autism Awareness Month) about my fellow Autistic adults, working my way through the alphabet as I talked about ways to understand and accept us better. ‘P’ is for Poverty. So much energy is going toward making Autistics employable and very little is going toward helping Autistics secure disability benefits. I understand the huge emotional investment in wanting to help us all get jobs, and I don’t want to cut back on those efforts at all.

We aren’t all employable. Some of us have energy levels too low to sustain full-time employment. Some have health issues severe enough to result in a large number of missed work days. Additionally, many of our health needs, for example special diets are expensive enough that a living wage for a non-disabled person is NOT a living wage for some of us.

I’ve (mostly) come to terms with my own poverty, but I worry about many of my fellow Autistic adults. I feel very strongly that there should be more assistance for Autistic adults who need disability benefits but are having a hard time with the paperwork and documentation. Additionally, homelessness makes it harder to get disability benefits.

I applied for SSI several times before I finally got it – not because I was being turned down, but because I was too hopeless and struggling to keep up with the application process.

Helping Autistic adults to get disability benefits isn’t glamorous. It is hard to feel like one is doing good work when the focus has always been so strongly directed toward getting disabled people into the workforce.

But it’s clear that it’s time to admit that some Autistics – even some highly educated Autistics – are not going to be able to work. We need more legitimate work-at-home opportunities, more support and assistance at finding and keeping online employment. And, a lot of help in getting disability benefits for those who aren’t able to work full-time or at all.

We have a political climate where poor people are blamed for their poverty and disabled people, particularly those without obvious physical disabilities, are viewed with great skepticism. Vulnerable people who really need disability benefits should get help with the often confusing process of application, appeals, documentation, and more.

I spent a lot of time living in the streets and eating at soup kitchens and from dumpsters before I was able to get on SSI. I want people to understand how easy it is for Autistic adults to end up homeless. I’ve also had plenty of Autistic friends who were living in substandard conditions or living with aging parents, who don’t have resources themselves. It has been a silent crisis for too long. We need help and we need it now.

< My Thoughts > “We need help and we need it now.”

Recent studies show that 12 – 15% of the homeless worldwide have autism.

Bennett (2016) wants people to know that there is less known about how those with undiagnosed ASD present as adults. Another problem of concern is about other critical living conditions, such as living with aging parents on living on the street.

Bennett suggests that it would be beneficial for the government to increase funding for evaluating health systems to enable citizens to receive a correct diagnosis, including senior citizens. And, to channel their funding and attention to the medical discoveries which will advance all human health in ethical dimensions, especially for seniors with autism.

Edleson & Bauman (2020) believe that the adult autism community reaching adulthood is thought to be half-million. Saying in their article that the autistic brain that may reduce the probability of the autistic individual developing some of the common age-related disorders as they age.
They share the following success stories –

Mark Rimland, 60 years old, lives with his mother and older brother. He attends adult school for persons with disabilities where he has a passion for creating acrylic art and mosaics.

Dr. Temple Grandin, 68 years old, a well-known author and famous for her tireless efforts to promote humane treatment of herd animals.

Donald T., 80 years old, drives a car, plays golf and spends time with the locals in the community.
In this article, they also reveal that when adults with challenging behaviors seek healthcare, and/or residential placement this behavior becomes a factor. The other adult-brain age-related circumstances present may be difficulties with ‘executive functioning’, memory, depression, anxiety, and/or dementia. That private and public agencies have delayed in planning for the senior autism community.

Senator (2016) exclaims her concern about Nat’s adult autism was keeping him safe, as he ‘aged out’ of his doctor, pediatrician, and GP’s practice. His physician, Dr. McDougle, told her that one of her biggest concerns should be identifying primary care physicians who will care for adults with autism.

Explaining that as they age autistics may begin to show unusual behavior, have seizures, GI issues, weight gain, motor, and other issues. Families need a multidisciplinary approach, but person-centered planning. The focus should be on acceptance, instead of focusing on differences. With an emphasis on Mental Age & Chronological Age, social, & non-social, and where they are on the spectrum.

Sullivan, et al. (2012) found that families with an autistic child often need grandparent involvement. Involvement for support with caring, transportation to appointments, as well as for financial back-up. Grandparents were also found to help the family with the acceptance of children with disabilities, contributing positive attitudes and often serving as a parenting and teaching model.

There are many out there who have taken on this role. Then there is that population of aging parents and grandparents, who are themselves on the spectrum, many undiagnosed. Whichever senior category one fits into, there certainly are NOT enough supports and services to adequately help make life a little easier.

Heasley, (2020) has information about aging caregivers of adults with autism who are struggling and find it a great burden. This study shows that 320 parents over the age of 50 are caring for adult children with autism. The severity of the persons autism and their inability to complete daily living skills, can be especially challenging; bathing, preparing meals, and attending activities.

This study showed that the autistic individuals with destructive or non-purposeful behavior, lack the ability to shop or manage money. An added burden revealed, was the carrying on with the necessary activities of the day. Activities such as, attending school, or obtaining employment was included.

One of the determinations of the study was the need for programs developed by social workers, and/or health professionals who are cognizant of the elderly parent’s and caregiver needs.

a. 40 Something
Clark (2016) candidly claims – I was diagnosed with autism last year, in my late 40’s. I’ve always known I was different, and sought a formal diagnosis after the traits I’ve lived with for almost five decades. Women and girls were more likely to be misdiagnosed than men and boys. And many women remain undiagnosed until their 20’s and 30’s.

Leonard (2019) learns that seeking an autism diagnosis as an adult can be challenging for several reasons –

Receiving a diagnosis later in life, when you have milder symptoms may be difficult for a physician to recognize.
People living with ASD for some time, may be better at disguising or managing the signs and symptoms.
No established method of diagnosis in adults is currently available.

Two suggestions are offered, one that autism may be considered as the cause of, or may be comorbid with, other mental health conditions. Another suggestion was that Mental Health professionals who are considering an autism diagnosis, consult a developmental pediatrician, or child psychiatrist who has experience in treating autism.

< My Thoughts >      “…consult a developmental pediatrician, or child psychiatrist…”

Consulting other professionals or clinicians requires a formal referral from one agency to another, with the approval of the insurance company, and in accordance to their ‘provider’ list.

Colling (2015) claims cognitive changes are common when people age, but what happens with aging if one has a psychiatric disorder like autism, that is, what if one already has cognitive deficits? Will everything deteriorate faster, or do efficient compensatory mechanisms develop? At present, it is unknown what happens when people with autism age.

The impairments are thought to last a lifetime. Even though some autism symptoms seem to decrease with increasing age, elderly with autism will not reach normal levels of social functioning. Today we realize that many have functioned with autism throughout their life, without ever being diagnosed, and are now elderly. Caregiving needs of the elderly with autism often encompass other mental issues such as dementia as they have aged.

< My Thoughts >      “…when people with autism age…”

Cognitive changes are somewhat expected in the general society when people age, but can be anticipated earlier in the autism population. Also, an underlying theme in my reading about the adult-child as they age is that for the severely autistic like Sonny, the life expectancy seems to be around 40 years old. My guess is that the toll of hypertrophic drugs over the years, erratic nutrition at crucial ages, and perhaps eventually a failure to thrive leads them to the end of their noble journey.

Singer (2019) says studies of support, treatment, and diagnosis of people with autism usually searches out young people. There is a shortage of research on support or even diagnosis of persons as they age with autism. She states there is a real need for person-centered care and support, especially critical for those with severe ASD who may need assistance with all activities of daily living. That when an ASD individual turns 21 years of age, there is a big gap in services. But that the goals for addressing problems with communication, health care, and housing are still there.

The adult-child needs help with many quality-of-life-decisions, management of symptoms, and self-acceptance. Many have become their own self-advocates, but need support for continuing success. New assistance programs are needed for the most basic things, to insure that like all of us, they deserve to be treated with dignity and respect.

Remnick (2019) reveals the ‘services cliff’ so called when a child turns 21. This person is no longer eligible for public education and services, under United States federal law. This can send families scrambling, with few suitable options.

< My Thoughts >                     “…few suitable options.”

Under the ‘Law’ Unit, there is information about a ‘Transition Plan’ which should be put in place as part of the student’s Individualized Education Program (IEP). Depending on the state’s school district, around the age of 14 years, the student’s ‘after graduation’ trajectory goals should be put in place. Some states begin a lot earlier.

Remnick resumes with the case of Anthony who turned 21 and was left to ask – What happens when people with autism age into adulthood? He may consider continuing his education, no matter how expensive or seemingly futile. Or, maybe he will become one of those ‘older men’ sorting supplies for a window-shade manufacturer. His mother was heard to be mumbling, “There must be something better.”

Most often, between the family and the perfect solution there is a thicket of bureaucracy, because many thought these kids would never grow up. As a result, parents end up essentially devoting their entire lives to fighting on behalf of their children.

Wright (2016) wants to add that not surprisingly, many adults with autism over the age of 50 have never been diagnosed; others received their diagnosis late in life. In most countries a diagnosis of autism might help younger people gain access to support services, such as visits from aides, or visits to health clinics. Meanwhile, the unusual needs of most elderly adults with autism goes unrecognized and/or unmet. Isolation that many people on the spectrum experience due to social and communication difficulties is likely to worsen with age. And often seen depression, might stem from a sense of helplessness in one’s daily life.

b. Geriatric
Zagaria (2019) cautions that geriatric care for people with autism, not only requires the clinicians to have knowledge of the complexity of geriatrics, but also the complexity of the Autism Spectrum Disorders; plus, the possibly many co-morbid conditions. As well, she states that heightened awareness of underlying, undiagnosed conditions and medications for those conditions, which may affect a patient’s wellbeing should be made aware of.

Holling (2015) has found that a lack of data for how autism affects the elderly may be due to the institutionalization of those with what are sometimes considered to be ‘mental disabilities. He believes the cognitive changes are common when people age, but its only within the last 30 years that the healthcare community considered the cause possibly due to autism.

Powell, et al. (2017) put the gradual decline of perceptual processing, working memory, attention, cognitive flexibility, and inhibitory control in executive functioning as typical evidence of aging.

Along with the core aspect of the typical aging process, this study wanted to know whether aging effects the cognition of persons with autism more; especially after the age of 50 years old. They also wanted to know why cognitive impairments persisted across the ASD lifespan. This study also focused on how intellectual functioning influenced the type and/or rate of decline. Mention was made of the fact that many of the participants were on very strong medication, over their lifetime. No mention was made of how ‘side-effects’ of these drugs effected cognitive functioning, over time.

< My Thoughts >                   “…why cognitive impairments persisted…”

Apparently as persons with autism age, the aging population doesn’t become older and wiser. The elderly person with autism finds themselves further declining, cognitively. Studies are made and articles are written when research needs to be made on new evidence, or when something suspected to be true needs to be proven. Services can’t meet ‘standards’, nor ‘best practices’ followed, if none are established in the first place.

Agency Writer (2019) asks you to understand autism first because there are plenty of disorders under autism. But each person has one thing in common – they have trouble prioritizing relevant things around them.For example, when an average person walks into the room, he notices his surroundings and evaluates how he should fit in. A person with autism, on the other hand, notices every little detail in the room and fails to prioritize the most relevant ones. As a result, his world appears to have many distractions. S/he also has difficulty in relating with other people.

Caring for Adult Patients with Autism – Nursing care for autistic adult patients is different from the care of autistic children. As a grown-up adult, autistic persons are easier to manage than autistic kids. They have more controlled behavior but they are unlikely to disclose their feelings to other people. As a result, it’s hard to diagnose life-threatening health problems among adult patients with autism. They also have a high threshold for pain so they are likely to keep their discomforts to themselves.Rudy (2020) resists suggesting that state and federally funded group homes are the perfect solution. Due to funding and other resource problems, good ones are hard to find. Difficult too, is the traditionally constant turnover, in staff and residents.

Typical living situations are often hard to manage for those high-functioning adults with autism. Those with severe anxiety, social deficits, and/or sensory dysfunctions don’t like the unexpected changes, constantly taking place in a group home.

Then, there are those with autism who are non-verbal, have aggressive tendencies, and cannot manage challenges, who may be better off placed with relatives.

< My Thoughts >            “…who are non-verbal…”

Sonny is ‘all of the above’ – is non-verbal, has aggressive tendencies, and cannot manage challenges. In the group home setting, for instance, staff works in shifts. If Sonny has established a rapport with a certain staff member, and this is their day off; and, Sonny himself is feeling ‘off’ that day, then we are probably going to get a phone call to come and calm him down.

But, after successfully getting him settled, we had to leave before the organization’s traveling nurse delivered medications. Again, this is someone new; or, someone who has brought applesauce instead of chocolate pudding to give with his medication. So, you see that the levels of the person’s disability is definitely one of the determinates, as to how well they will adjust to living in a group home.

Still other autistic adults may find an adult day care program, or sheltered workshop setting. They may find reciprocal relationships with peers and even find meaningful friendships and/or partnerships. Other have even become successfully employed, finding jobs in technology, video game production, and robotics.

Edelson & Natowicz (2021) know that the challenging behaviors of aggressive adults with autism can be disturbing, destructive, dangerous and even life-threatening. One study showed that 44% of persons with childhood aggression have been unable to overcome it; continuing with challenging behaviors into adulthood. Now as adults, these aggressive behaviors, can come from persons who are physically of normal adult size weight and strength.

< My Thoughts >             “…these aggressive behaviors…”

Undesirable behaviors have a spectrum –
·       Repetitive & purposeless behavior. Relatively harmless, but stands in the way of learning.
·       Self-injurious behavior. Vary dangerous, life-threatening and difficult to stop.
·       Aggressive behavior. Extremely and progressively dangerous, often due to its unexpected nature.

This study showed report of caregivers of these persons as unable to ‘handle’ their behaviors outside of the home setting. Thus, they rarely felt it was safe to take their sons and/or daughters into the community without using ‘sedative-type’ medications to keep them calm. Often times, they also need medication to resolve the pain from self-inflicted injury. Additionally, there are reports from adult autism group home caregivers of unexpected outbursts which kept them ‘walking on eggshells’ when certain residents were present.

Sonny has been in state-run group homes where there have been aggressive adolescent residents who have, even though they are only in their teens, have reached full adult height and weight. This usually results in that resident being removed, when the problem with compliance and safe conduct cannot be resolved.

Arky (2018) shares the stories of parents who were exploring their autistic adult’s future, living away from home. Barbara Fischkin helped create a home away from home for her son Dan. She shared the story of his “miracle” group home—funded by the U.S. Department of Housing and Urban Development and run by the Nassau County Chapter of AHRC, a nonprofit group. Two years later, she reports that Dan, now 24, and his three housemates, are becoming more like a family all the time. The guys look out for one another. Dan is still not verbal and has an aide most of the time, but is making great progress with independent computer typing communication.Top of Form

Susan Senator, involved with ‘The Project’, explained that she joined families preparing to create a livable setting for their sons, along with her son Nat. They had secured some donated furnishings to start with, and the rest was paid for out of the young men’s budgets. Senator and friends watched Nat’s story unfold, including their shopping trip for a pillow, a lamp and a rug. “Nat chose aquas, very wild stuff!” Senator says. “I had no idea!” Other interested parents followed the project closely, seeing it as a possible template for their adult-children.

‘The Project’ is a shared living arrangement. Senator says that it’s like a group home, except that there’s a live-in caregiver, which Nat qualifies for due to his level of disability, as opposed to only a rotating staff. Nat works three days a week, sharing a job coach with two other young men. This coach is paid for by a state allocation. Half of Nat’s funding comes from the state, half from Medicaid. After he’s given a budget for rent, living expenses, transportation, and his job coach, the family works with Nat’s service provider to “come up with ways to stretch the money.”

< My Thoughts >                       “…come up with…”

No matter how much you come up with a creative plan, chances of the inevitability that the best laid plans will not be fulfilled is huge. But one must begin planning for the autistic adult’s future life, as well as eventual loss of their longtime caregivers. Meanwhile, keep trying to expand your adult-child’s horizons.

Susan Senator and her son Nat are mentioned, in their own right, throughout the book. You can also find her wise words in books, online in BLOGs, and on social media.

REFERENCES: UNIT 6 FUTURE CHALLENGES –– OLDER ADULT (a. 40 Something, b. Geriatric)

Agency Writer (2019). Autistic Children – They Need Your Attention & Skilled Nursing Services; Retrieved online from – http://www.bestcarehomecare.com/nursing-agency-for-autistic-children/

Bennett, M. (2016). “What is Life Like in the Twilight Years?” A Letter About the Scant Amount of Literature on the Elderly with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.1883 – 1884.

Clark, N. (2016). I Was Diagnosed with Autism in My 40’s: It’s Not Just a Male Condition; Retrieved online from – https://www.theguardian.com/

Colling, T. (2015). Home Care Needs of the Elderly with Autism; Retrieved online from – https://www.familyaffaires.com/home-care-needs-of-the-elderly-with-autism/

Edleson, S. & Bauman, M. (2016). Aging in Autism: A Call to Action; Retrieved online from – https://www.autism.org/aging-autism-call-to-action/

Edelson, S. & Natowicz, M. (2021). Challenging Behaviors in Adults with Autism; Autism Research Review International, V35:1.

Heasley, S. (2020). Even In Adulthood, Autism Challenges Linger For Caregivers; Retrieved online from – https://www.disabilityscoop.com/2020/11/13/even-in-adulthood-autism-challenges-linger-for-caregivers/29083/

Jones, S.R. (2016). The ABCs of Autism Acceptance; eBook 2016 Edition.

Leonard, J. (2019). Autism in Adults: Signs, Symptoms, & Diagnosis; Retrieved online from – www.medicalnewstoday.com/articles/

Powell, P., Klinger, L., et al. (2017). Patterns of Age-Related Cognitive Differences in Adults with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V47; p3204-3219.

Remnick, N. (2019). Why Are There So Few Services for Autistic Adults?; Retrieved online from – https://www.theatlantic.com/family/archive/2019/

Rudy, L. (2020). Facts about Adult Autism; Retrieved online from – https://www.verywellhealth.com/top-10-facts-about-adult-autism-4140671/

Senator, S. & Robinson, J. (2016). Autism Adulthood: Strategies & Insights for a Fulfilling Life; eBook Edition.

Singer, J. (2019). Autism in Older Adults; Retrieved online from – psychcentral.com/

Sullivan, A., Winograd, G., et al. (2012). Children of the Autism Spectrum: Grandmother Involvement and Family Functioning; Journal of Applied Research in Intellectual Disabilities; v24, p484-494.

Wright, J. (2015). Adults with Autism Face Old Age Without Much Support; Autism Spectrum Research News; Retrieved online from – https://www.spectrumnews.org/

Zagaria, M. (2019). Autism Spectrum Disorders in Aging Adults; Retrieved online from – https://uspharmacist.com/article/autism-spectrum-disorders-in-aging-adults/

APPENDIX

Respite Resources –

Easterseals: Many local affiliates of Easterseals provide respite, adult day services, and other supports for individuals of all ages and disabilities. To connect to an Easterseals affiliate in your area, search online.

Eldercare Locator: A public service of the U.S. Administration on Aging connecting you to services for older adults and their families. You can search online.

Benefits.gov: The official benefits website of the U.S. government that informs citizens of benefits they may be eligible for and provides information on how to apply for assistance; search online.

Aging and Disability Resource Centers: If you are looking for information or assistance with long term services and supports for yourself or for a friend or family member, you can locate the Aging and Disability Resource Center (sometimes also known as the No Wrong Door System); search online.

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APPENDIX

8 Nurse Tips for Dealing with Autistic Patients (Part 2).Retrieved online from – www.nursebuff.com/nursing-and-autism//1. Follow the autistic patient’s routine at home
People with autism cooperate best within structured routines. Changes in their routines make autistic patients anxious and less cooperative.

2. Provide simple and straight-to-the-point instructions
Autistic patients have difficulty in reading between the lines. They often misunderstood complex instructions. They may ask questions, so make your answers direct to the point as well.

3. Be slow with physical contact
Do not touch autistic patients without warning. They get easily stressed with unanticipated physical contact. To gain their trust, start first by sitting close to them. Eventually ask, “Can I hug you?” so he will not be surprised with your actions.

4. Maintain a calm environment
Patient placement is critical for nursing and autism care. Since autistic patients are highly sensitive to sound, they should be placed in a room with minimal distractions and equipment.

5. Treat them as equal
Lack of socialization skills doesn’t mean that autistic adults also lack empathy or emotion. They recognize negative behavior. To gain their trust and cooperation, treat them like the other patients you have.

6. Encourage to bring their comforting item
Advice the guardian to let the autistic patient bring his favorite comforting item like a stuffed animal or a book. This reduces anxiety and helps in building trust.

7. Be transparent with your promises
When you say you will be back within five minutes, an autistic patient will expect you in no more than five minutes. Any delay or failure with your promise may lead to anxiety and tantrum attacks. To avoid this, be specific and realistic with your statements. Say “I will be back by 4:00 PM” and, “This will hurt like your first flu shot”.

8. Pay attention to non-verbal cues
Autistic adults have difficulty in transcribing their feelings to verbal expressions. For this reason, they are likely to keep their health complaints until they can no longer hold it. To prevent this, pay attention to non-verbal cues when doing physical assessment to them. Abdominal guarding, facial grimace and constant shifting in bed are some nonverbal cues.

Just remember that whenever you are having a hard time in dealing with autistic adults, seek the help of your senior nurses. With their years of expertise in nursing care, they have their own strategies in providing nursing care to adult patients with autism.
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Home Care Needs Of The Elderly With Autism Posted on April 23, 2015 by Tim Collingsworth: Retrieved online from – https://www.familyaffaires.com/home-care-needs-of-the-elderly-with-autism/

Defining Autism. Autism is a cognitive impairment of the brain. Symptoms include deficiencies in social interaction, communicative abilities, and/or creativity or imagination; with a “spectrum” of the disorder that encompasses various types of autism (referred to as ASD or Autism Spectrum Disorder).

How Autism Affects the Elderly

The US National Institutes of Health say that there is a lack of research regarding senior citizens who have autism; most likely because it has only been within the last 30 years that autism was not viewed as an immediate cause for institutionalizing a person. Institutionalization reduces the likelihood of a person ever being functional in society and often resulted in premature death.

The NIH article states, in part –

“Cognitive changes are common when people age, but what happens with aging if one has a psychiatric disorder like autism, that is, what if one already has cognitive deficits? Will everything deteriorate faster, or do efficient compensatory mechanisms develop?

At present, it is unknown what happens when people with autism age. The impairments are thought to last a lifetime… Even though some autism symptoms seem to decrease with increasing age, elderly with autism will not reach normal levels of social functioning.”

Today we realize that many have functioned with autism throughout their life, without ever being diagnosed, and are now elderly. Caregiving needs of the elderly with autism often encompass other mental issues such as dementia as they have aged.

Caregiving Needs for the Elderly with Autism – Combining both typical aging and special needs that include their autism creates a different set of caregiving needs for the elderly with autism.

Calm Surroundings – In some senior care situations the autistic seniors are highly medicated in order keep them calm, when in actuality it is their surroundings that are agitating them. Many times, those with various forms of autism do not like loud sounds, excessive noise or over stimulating surroundings.

Minimal Changes – Changes can cause confusion, aggression, and a feeling of being lost when things aren’t “the way they usually are.” It is one of the benefits of keeping the senior in their home for as long as possible to help maintain quality of life.

Comfortable Socialization – While socialization is important to quality of life, in can often mean loud forms of entertainment & large groups of people. It is important to socialize the senior with minimal intrusion & loudness, keeping in mind what entertains them specifically.

Limit New Faces – It seems that a very small group of the same caregivers work better than having a multitude of faces for the senior to deal with on a regular basis.

Conversing – It becomes difficult for the elderly with autism to converse; with one of the issues being the inability to connect with such things as irony, recognizing expressions and focusing on during conversations.

Points to Remember When Providing Caregiving for the Elderly with Autism –

When caring for the elderly with autism, the lack of prior diagnosis and understanding is basically creating an entire generation that we will be learning from as they age. However, some things are very clear when it comes to caregiving for the elderly with autism.

§ It’s not good to continuously change caregivers & everyday faces.
§ There is a learning curve with each individual that may be overlooked without one-on-one care.
§ Socialization is important; however, understanding how the person socializes best is more important than providing socialization just for the sake of socialization.
§ Overstimulation can trigger outbursts and confusion.
§ Calm, quiet and serene surroundings work best.
§ Utilizing prescription medication to calm and desensitize elderly people with autism is not providing quality of life for them; in most cases it is an easy way to keep them from being troublesome to an understaffed caregiver situation.
§ Limited changes in surroundings cause less confusion & agitation.

Unfortunately providing caregiving for those with dementia is difficult enough; but adding the issues associated with autism creates an even more difficult and new frontier to the world of caregiving. We now focus on quality of life as we age, so it is important to learn how to deal with a multitude of mental and physical issues that are now recognized and better understood; including the elderly with autism.

It is important to understand that autism itself provides each patient with different troubles as they progress through life. Some may become quite functional in most categories of society, while others may find certain inabilities to full function.

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APPENDIX

Finding Respite Providers or Programs, Respite Funding and Eligibility, Additional Resources – search online.

How do I choose a respite provider or adult day care program?

For guidance in selecting a respite provider or program, read the ABCs of Respite before you get started. Use respite frequently and as early in your caregiving experience as possible, search online.

Where can I find respite providers or programs for a child, adult or older person with a specific condition in my state?

To search for respite in your state, search online.

Where else can I find respite providers or answers to other questions about respite in my state (e.g., how to start up a respite program; licensing or regulatory issues; provider training opportunities)?

For more information on State Respite Coalitions, search –
Respite Funding and Eligibility, search online.

How can I pay for respite services?

1) Family Caregiver Support Program:

Respite is one of the supports offered through the State's Family Caregiver Support Program. Individuals eligible for respite care under this program are:

Family caregivers providing care for individuals age 60 or older;
Family caregivers providing care for individuals with Alzheimer's disease and related disorders, regardless of age; or
Grandparents and other relative caregivers (not parents) 55 years of age and older providing care to children under age 18; or
Grandparents, parents, and other relative caregivers 55 years of age and older providing care to adults ages 18-59, with disabilities, to whom they are related by blood, marriage, or adoption.
Tribal Organizations can set a lower age than 60 for members to be considered as elders eligible for services.

To find the Family Caregiver Support Program closest to you, visit the, search online.

2) Medicaid Waivers that pay for Respite:

Medicaid waivers provide the largest federal source of funding assistance for respite. Each State develops their own waiver eligibility criteria and conditions for specific populations. Waivers are subject to federal approval. To see if your state has a Medicaid waiver that you or your family member may qualify for, click here.
Keep in mind that many states maintain waiting lists for Medicaid Waiver services. It is not an automatic entitlement, as is the regular Medicaid State Plan program, although some states may be converting their Medicaid waivers to state plan benefits, search online.

3) Other Possible Public Funding Sources and Eligibility Information:

If you do not qualify for funding under the Family Caregiver Support Program or any of the Medicaid Waivers described above, check this table for other possible state funding sources, search online.

Many states fund respite programs with state or federal funds, either alone or in partnership with private organizations. Such programs are generally designed to serve one or more specific populations, such as the aging; infants and toddlers; adults or children with physical or developmental disabilities; children with special health care needs; children or adults with mental health conditions; kinship care providers; children in state custody or foster parents. Funding for these programs is generally limited and may depend on annual appropriations. Programs may be de-funded or eliminated altogether in times of fiscal crisis. The information obtained here was gathered from the internet, from phone interviews or email communication. Information has been verified to the extent possible, but because of frequent legislative and programmatic changes, you should check the state website or call the state agency to confirm that the information is up to date. If you find the information to be incorrect or incomplete, please alert ARCH.

4) If the person you are caring for is a Veteran:

Call the VA Caregiver Support Line at 1-855-260-3274 or click here to visit the VA Caregiver Support website, search online.

Additional Resources

Other than respite, what other supports and services are available?

Family Care Navigator, hosted by the Family Caregiver Alliance, is a comprehensive state-by-state searchable data base that provides a list of government and private services and supports for family caregivers and care recipients, search online.

State Self-Direction Programs: If a person with a disability or chronic condition is eligible for Medicaid, they may qualify for financial assistance that can be used to purchase necessary home and community-based services and supports, including payment to the family caregiver or to pay for respite. Such programs are sometimes known as cash & counseling, consumer or self-directed programs, or other names selected by the state. To find state Self-Direction Programs on the Applied Self-Direction, search online.

Family to Family Health Information Center (F2F) and Family Voices: For assistance in finding services and supports for children with special health care needs from other parents and professionals, find your state's F2F center or Family Voices state chapter, search online.

Easterseals: Many local affiliates of Easterseals provide respite, adult day services, and other supports for individuals of all ages and disabilities. To connect to an Easterseals affiliate in your area, search online.

Eldercare Locator: A public service of the U.S. Administration on Aging connecting you to services for older adults and their families, search online.

Benefits.gov: The official benefits website of the U.S. government that informs citizens of benefits they may be eligible for and provides information on how to apply for assistance, search online.

Aging and Disability Resource Centers: If you are looking for information or assistance with long term services and supports for yourself or for a friend or family member, you can locate the Aging and Disability Resource Center (sometimes also known as the No Wrong Door System) nearest you by contacting the Eldercare Locator, search online.

APPENDIX – GUARDIANSHIP REVOKED

DISCLAIMER: Because this information is often difficult to obtain, this is an EXAMPLE (only) of what may be needed, regarding guardianship.

Terminating an Adult Guardianship

In most cases, a court hearing is required to terminate a guardianship over an adult. Anyone - a guardian, a relative, or the subject of the guardianship - can file papers asking the judge to decide whether a guardianship is still needed. Read this section for more information about why a guardianship may be terminated, and to find the forms needed to ask a judge to end the guardianship.

FYI! If the protected person passed away and all of the surviving heirs will agree to waive a final accounting, you may be able to close the case with following the steps on this page and without a hearing. Follow the instructions and complete the forms in the Petition to Waive Accounting and Close Case (protected person Deceased) packet. If all of the heirs will not sign the included consent form, you must instead follow the instructions below to terminate the guardianship.

How to Terminate an Adult Guardianship

1. File the Papers

You will need to complete a Petition to Terminate Guardianship, and a Citation or a Notice of Hearing. You may also need to provide other documents depending on your situation.
Fill out all of the forms in the packet below, and follow all of the included instructions.

If the protected person has passed away: Complete the Notice of Hearing instead of the Citation that is included in the packet above. This lets any interested parties know of the court date if they want to attend and speak to the judge.

Other Documents You May Need:

Depending on the reason you want to close the guardianship, you may need to provide other documents to support your request. Some common forms that must also be submitted to the court are:

Final Accounting. If you are the guardian over the protected person's estate, you must provide a final accounting to the court. The following document can be attached as an "Exhibit" to your petition so the judge can approve of the final accounting at the same hearing.

Doctor's Letters. If you want to close a guardianship over an adult who has regained competence, you must provide two letters from two doctors stating that the adult is competent. Attach the letters as exhibits to your petition.
Other State's Guardianship Papers. If you have moved to another state (with prior court permission) and opened a guardianship case there, attach proof of the other state's filing as an exhibit to your petition.

2. Serve the Papers

Once you have filed all of the necessary papers, you will have to serve the papers on all required people. THIS STEP IS VERY IMPORTANT! If you do not follow this step properly, the judge may cancel your hearing!
You will have to send the Petition to Terminate Guardianship along with the Citation (or Notice of Hearing if the protected person has passed away) to the protected person, the guardians, the protected person's relatives (the same ones who have been receiving notice of prior proceedings), and the protected person's attorney. This is to make sure all of these people know about the hearing and have a chance to respond to your papers.

How to Serve the Papers:

If the protected person is alive: Mail the petition and the citation to all of the required people by certified mail, return receipt requested.
If the protected person has passed away: You can send the petition and the notice of hearing to all of the required people by regular mail.

3. On the Day of the Hearing (and after):

Make sure to arrive at the courthouse early for your hearing so you have enough time to park, get through security, and find the courtroom. Check in with the judge's marshal.
When your hearing begins, the judge will ask some questions to you and anyone who is at the hearing for your case. The judge may make a decision after hearing from everyone.

If the judge terminates the guardianship, the judge will sign the Order Terminating Guardianship. This form is included in the packet above; bring it with you to court. After the judge signs the Order Terminating Guardianship, you must make sure the order is filed at the Clerk's Office. You will then be responsible to send a copy of the order to all required people, and file a Notice of Entry of Order with the court so the judge knows that all required people have a copy.

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DISCLAIMER (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023

Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.

This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.

FREE ASD BOOK UNIT #6, continued. Where To Look For Resources? Ch. 3 Laws -Federal & State, Ch. 4 Family Law, Ch. 5 Future Challenges (College, Career, Older Adult) with < My Thoughts > by Sara Luker

FREE ASD BOOK UNIT #6, continued. Where To Look For Resources?
Ch. 3 Laws -Federal & State, Ch. 4 Family Law, Ch. 5 Future Challenges (College, Career, Older Adult) with < My Thoughts > by Sara Luker