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.)
APPENDIX A - Respite Resources
APPENDIX B - Additional Resources
APPENDIX C - 8 Nurse Tips
APPENDIX D - Adult Guardianship Revoked
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, B. (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, B. (2018) 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, L. J. (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, M. (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, N. (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, D., Galgg, S., et al. (2015) tell 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 –
Wentz, E., Nyden, A., 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!
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, B. (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, B. (2018) 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, L. J. (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, M. (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, N. (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, D., Galgg, S., et al. (2015) tell 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, E., Nyden, A., 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, L. J. (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, L. J. 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, L. J. 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, B. (2018) exclaims that 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, Chapter 5 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, M. (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)
Many parents of children with autism hope that they will one day become a somewhat ‘normal’ adults with autism.
Rudy, L. J. (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, L. J. 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, L. J. 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, B. (2018) exclaims that 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, Chapter 5 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, M. (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, S. R. (2016) shares this – 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 (U. S. government Supplemental Security Income) 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, M. (2016) believes 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, M. 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, S. & Bauman, M. (2016) accept 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, S. & Robinson, J. (2016) exclaim 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, A., Winograd, G., 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, S. (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.
Jones, S. R. (2016) shares this – 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 (U. S. government Supplemental Security Income) 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, M. (2016) believes 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, M. 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, S. & Bauman, M. (2016) accept 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, S. & Robinson, J. (2016) exclaim 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, A., Winograd, G., 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, S. (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, N. (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, J. (2019) learns that seeking an autism diagnosis as an adult can be challenging for several reasons –
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, T. (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, J.(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, N. (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.
Parents can educate themselves about their 'state laws', regarding the 'aging out' process for the 'adult-child' with autism. Also, you may wish to look into 'nearby' states.
Remnick, N. 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, J. (2015) 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.
Clark, N. (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, J. (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, T. (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, J.(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, N. (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.
Parents can educate themselves about their 'state laws', regarding the 'aging out' process for the 'adult-child' with autism. Also, you may wish to look into 'nearby' states.
Remnick, N. 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, J. (2015) 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, M. (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.
Powell, P., Klinger, L., 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, L. J. (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, S. & Natowicz, M. (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
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.
Some states are paying families to become a 'Host Family' to those with autism. Check with a state social worker.
Arky, B. (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.
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 aqua, 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/
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/
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/
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 A - 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.
APPENDIX B - Additional Resources
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.
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 C - 8 Nurse Tips
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.
APPENDIX D – ADULT 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 (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2024
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.