Excerpt from FREE ASD BOOK –

Know Autism, Know Your Child with < My Thoughts > by Sara Luker. UNIT 6 CH 5 FUTURE CHALLENGES (OLDER ADULT)

UNIT 6 CH 5 – Where to Look for Resources
CHAPTER 5 – FUTURE CHALLENGES
          COLLEGE
          CAREER
 
Arky (2018) interviewed 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. Other students who are termed ‘high-functioning’, including those 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. Yet, they too will lose services.
 
< 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 Programs which may be of assistance, for disabled persons globally.
 
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.
 
< 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).

Gardner (2013) marvels,  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.

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 process’. 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…”
 
If you feel marginalized or you are not being heard, don’t get comfortable. Trust your parent radar. you have the legal right to can engage advocates, mediators or even legal advisors to guide DUE PROCESS; guaranteed to your child by Individuals with Disabilities Education Act (IDEA).
 
References:
 
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/

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.

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

Smart Goals poster from Understood; https://www.understood.org/

GOING TO SCHOOL ~

With school beginning, in some places, here are some ‘special needs’ things to consider.

Note: DISCLAIMER – Autism ‘intervention’, as with the phrase ‘Early Detection / Early Intervention’, may simply mean to attempt an ‘action’, or attempt to ‘change a course’ or ‘trajectory’ of the person’s autism. Any expectation for a successful ‘change’ must have the cooperation of the participant, the parent, and/or the assigned therapist. Words such as, ‘instruction’, ‘intervention’, ‘treatment’, ‘therapy’, ‘service’, or ‘program’ imply ‘cure’, or ‘long-term’ positive effect. That is NOT my intention here, and all information is presented without intent or suggestion of status or effectiveness.
 
Shepherd, et al. (2018) share that parents may hesitate because they feel vulnerable and overwhelmed by the challenging selection of interventions to choose from. Selection is often easier if their child has more severe deficits in one of autism’s ‘core’ areas; such as communication, behavior, gastrointestinal, or toileting issues. If that is the case, then the choice is narrowed down to finding the therapists or programs which specialize in those areas.

< My Thoughts >     “…challenging selection of interventions…”
 
Sometimes ‘instructional program’ sessions can be held at school, when trained staff is available. The problem there can be that of ‘continuity’ and ‘fidelity’ to your child’s individual program. The staff may NOT be dedicated to the specifics of your child’s program alone, and/or may work with your child in a group setting.

Also, when it is the only source of intervention, there could be a lack of important program continuance, due to school holidays and extended breaks. You may find someone to provide services, during this ‘gap’ time. Or, you might wish to take continue program activities yourself.
 
One of the reasons for the popularity of these aforementioned programs may be that they have successfully marketed to insurance companies. So, they can almost always be assured of ‘provider referral’ and ‘program coverage’ approval, by the parent’s insurance.
 
Deb, et al. (2020) recommend that when examining ‘intervention’ programs, look for these specifics –

• Fidelity to program protocols & procedures
• Accurate report of program outcome data
• Parent education/training for involvement in child’s intervention
• Program’s expected effect on child’s targeted ‘core’ symptom cluster
• Additional therapeutic positive/negative effect on behavior, sleeping, and eating regimes
• Positive effect on parental stress, knowledge, & confidence in the program
• Highly experienced & credentialed therapists to assure program integrity

Authors felt that ‘parent training’ was considered very important to the success of intervention programs, according to this clinical study.

< My Thoughts >     “…‘parent training’…”
 
Along with ‘parent training’, these programs should include ‘post-testing’ and frequent ‘follow-up’ checks. Parents need to know when things are no longer working, or more support is needed. Technicians may be ‘experts’ in their field…but, you are an expert in ‘knowing your child’.
 
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 may not be enough to qualify for state public school special education services, nor for an Individualized Education Plan (IEP).
 
Reasons and advantages of seeking an IEP for your child.
 
Six principles of and IEP –

1. Free & Appropriate Public Education (FAPE) for each child as ‘disability’ approved.
2. An appropriate evaluation, before determined eligible to receive an Individualized Education Program (IEP).
3. An Individualized Education Program (IEP) is a written statement of a child’s need for disability accommodations and modifications for education.
4. A Least Restrictive Environment (LRE) setting is where this IEP will provide for the child.
5. Parents and students will have appropriate notification, plus the opportunity to provide advice and consent, regarding the child’s IEP.
6. 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.
​
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 >             “…writing an IEP…”

Other important legal parts of an IEP are providing students with ‘testing’, ‘transportation’, and an all important ‘multidisciplinary IEP Team’ approach, during their educational journey.
 
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 acquire test-taking assistance. Often, they also needed the ‘accommodation’ to dictate or type out answers to ‘Essay Answer’ questions.
 
A students’ IEP’s can specify that the Resource Room (‘teacher of record’) advocate for them, during the school year. Thus, the 'special education' team becoming a conduit between a ‘general education’ teacher and the ‘special education’ student having problems with ‘communicating’ needs, and ‘understanding assignments’. Or, students otherwise needing a more immediate ‘modification’ and/or ‘accommodation’ for an immediate activity or assignment..
 
Note: Nastiti & Azizah (2018) state, current ‘special needs’ students in the United State of America, United Kingdom, Australia, Hongkong, New Zealand, Thailand, Saudi Arabia, and Indonesia legally have public and private school IEP’s readily available to them. The authors also mention that other countries are currently working towards developing such programs.
 
References:
 
Deb, S., Retzer, A., et al. (2020). The Effectiveness of Parent Training for Children with Autism Spectrum Disorder: A Systematic Review & Meta-analysis; BioMedCentral (BMC) Psychiatry, London, UK.

Nastiti, A., & Azizah, N., (2018). A Review on Individualized Educational Program in Some Countries; Retrieved online from – Conference: Proceedings of the International Conference on Special and Inclusive Education (ICSIE 2018).

Shepherd, D., Csako, R., et al. (2018). Documenting & Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V48; p988-1001.
 
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/