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Autism Spectrum Disorder in Adulthood

Tammi Reynolds, BA & Mark Dombeck, Ph.D., edited by Kathryn Patricelli, MA Updated: Sep 25th 2018

Autism spectrum disorder is a life-long, chronic disorder that can significantly impact affected people's social and cognitive development. As a result, adult functioning is frequently compromised. Some adults with ASD learn to function well in society. They can earn degrees and maintain gainful employment. Others never develop the communication and self-help skills necessary to live independently. The number of adults with autism spectrum disorder will rise significantly over the next several decades as the large group of diagnosed children age. Because of this, autism spectrum disorder in adulthood is an issue of increasing concern.

high school classroom When children with ASD reach the age of fourteen, their caregivers and teachers create a transition planning review in collaboration with the school district. The transition planning review covers issues like education and training as well as career planning. During this time, or sometimes earlier, many parents also give thought to preparing a plan for ensuring the welfare of their child with autism spectrum disorder if the child survives them.

Living arrangements and income are some of the major issues facing adults with autism spectrum disorder. While some can manage independently, others must be supervised around the clock to insure their safety. Even if an adult with ASD can maintain a job and can groom himself independently, he may not be able to deal with everyday situations requiring good social skills like meeting new people, asking appropriate questions or maintaining interpersonal relationships.

Fortunately, there are many employers who are willing to hire high-functioning employees with ASD. The ideal jobs for adults with autism spectrum disorder are usually quite structured in nature and make a virtue of their strengths and interests. Many high-functioning adults with ASD find gainful employment in computer-related fields, some like the repetition of assembly line work, and others prefer working with animals.

Living arrangements for adults with autism spectrum disorder differ from case to case. A low-functioning person with ASD with aggressive tendencies will usually need to be institutionalized. Fortunately, many can function quite well in group homes that provided assisted living support. Others live with family members throughout their lives.

Many adults with autism spectrum disorder go through adulthood still struggling with sensory issues and communication deficits that interfere with their ability to function normally. There are exceptions to this rule, of course. Temple Grandin, Ph.D. was diagnosed with autism in 1950. Her symptoms were severe enough that her doctor suggested she be put in an institution. However, instead of being institutionalized, her caregivers provided her with a structured environment and play activities throughout her youth. Like many children with autism spectrum disorder, Temple did not speak until she was almost four years old. Also, like many children with ASD, she was fascinated by animals. Her interest in animals was profound enough to have guided her towards a career as a livestock researcher, consultant and teacher. She ultimately was able to become educated, to complete a doctorate, and to become a college professor. Presently, Dr. Grandin teaches courses on animal science at Colorado State University. She is the author of several books, some concerning autism and some about livestock.

Singer Gary Numan (famous for the ground-breaking post-disco hit "Cars" during the late 1970s), Vernon L. Smith, Ph.D. (Nobel laureate in Economics), and Bram Cohen (infamous inventor of BitTorrent file distribution software) are other fairly famous people who have managed to do well for themselves as adults with high functioning autism spectrum disorder.

 

Reader Comments
Discuss this issue below or in our forums.

I know how you feel. - Paul Ying - Nov 10th 2014

I work as a receptionist at advocates life skills and learning center for people with autism.

my son - daniele colozzi - Aug 22nd 2011

worried!

My son is 42yrs old. he is presently hospitalized. he has asperger and mental illness. because some difficulties in his behavior, he is difficult to place. he has been in the hospital for over a year now. It is terrible because he is smart, funny, likable very talkative and is able to take care of himself. we are waiting for a home but are not sure weither they'll take him or not. he does not like to be supervised but needs it. any agencies to contact that you know in the boston area dealing with difficult clients?

thank you.   DC.

Where to begin... - - Dec 29th 2010

I was always going to write a book of my forty two year old son's battles for help,hope, and somedayimprovement ...sacrifice of a lifetime of one day at a time; praying a normal time will happen.  We (my husband died of sudden heart attack from our long stressful battle 6 yrs ago) always wanted to start a group home just to do it right! The insensitive Home organizations. the County Mental Health, and squandering govt. are thick as thieves with nonsense programs. I have worked, volunteered, and given more to different churches and charities but no help there.

There is two groups in this world the selfish greedy fun loving takers  "high on education" that serve the devil to  sucking squandering end. Then there is, the honest working thinking DIY/recyclers that want everyone to  have enough and what they need, without stealing from the lesser ones; God obedient ...we WILL be rewarded with God says suddenly IT IS FINISHED! Very SOON I hope Hang in there! be faithful!          

My latest crisis they want " my son out of his safe zone"; close the group home move hjm from city & all familair surroundings where he's been 15 yrs. into a spooky wooded noisy campground into drafty big house the director don't want to live in ,  As his guardian/mom it feels like their blackballing me to say yes, I can't :I won't. Thank you we must keep in prayer for one another. Mary

autism advocacy - michelle obama fan - Dec 23rd 2010

Adults with autism are often the forgotten minority in this country. While California State Institutions are closing, 100's of severely autistic adults are being dumped into the community with NO resources to back them up. Let's look at that hard cold reality here people: we're talking about 5'10" 180-220 lb autistics who can't talk, have the cognitive ability of 2-8 year olds, suffer from complex seizure disorders, and extremely complex intense behavioral issues, such as aggressive tendencies (trying to bite people's noses offf) to self-injurious behaviors (slamming fists into head, face, throat, hips, teeth, etc). Couple that with an apathetic disgusting system serving disabled, that basically tells parents and caregivers, "we aren't equipped to deal with this kind of disabled person." and you've got yourself a recipie for DISASTER and having people to rely on 911 for behavioral and medical emergenices, which shouldn't be a problem, since at least these autistic people are LEGAL citizens who are worthy of help, and not some illegal alien sucking off our system that calls 911 3x a year for a frigggin head cold. So, here's reality people: GET ready. GET prepared. Because 100's of severely autistic persons are coming into community that need help. These are NOT TEmple Grandins. These are not HIGH functioning autistics who play Chopin or are winning spelling bees. We're talking about highly complex cases that are far above the scope of expertise of almost every "professional" working with autistic persons in our state. So my advice is go find people that are able to help and advice on autism self injurious behaviors. Autism aggressive behaviors. People who know the complexities of autism mixed with multiple factors involved and quit wasting tax payer money on low level, substandard professionals who aren't experts, or who claim to be experts, but never know, aren't sure, and are forever "working on it." FU. If you don't then quit, and find someone who does know you idiots.

support group for moms who've given their kids into group homes - mountain - Oct 8th 2010

Does anyone know of a support group for moms who've had to give their kids with "profound classical autism" into group homes?

In case anyone is saying "Why do they need one, when they gave their problem away?" It is because, although I spend 2-3 days a week and every school break w/him, the guilt and mental anguish are overwhelming.

It is not something that you can talk to other moms about, and my family doesn't understand.

If there isn't one, do any of you need one, too?

Group home option - Lori - Jul 6th 2010

Referring to earlier posts about starting a group home, it is VERY expensive.  Even if you provide for four high-functioning adults who receive disability checks and earn wages out in the community, this will not be enough to cover costs. 

You're probably underestimating the costs.  First, you'll need round-the-clock staffing which you'll get from an agency because most people don't know enough reliable caregivers to commit to this job.  The agency has its own costs--building costs, employee wages, maintenance, taxes, employee training, etc.

The house has to be licensed to be considered a group home so it has to be adapted to meet certain codes.  Once a home is classified as a group home, the monthly insurance premium is astronomical. Plus you have to factor in snow removal, lawn upkeep, and home repairs.

Whether the clients work in the community or at an adult workshop, transportation needs to be provided.  While you're taking one client to the doctor, shopping or to a social event, can the other clients remain in the home unsupervised? If not, add'l staff will be needed.

It's a compassionate idea to want to start a group home but you'll need a steady stream of money to keep it going.  That is why wealthy people rely on foundations and campaign continuously to get donations.

Aspergers not autism - Thomas - Apr 20th 2010

It seems the people posting who say they have autism appear more as if Aspergers, as the definition is no delay in language or cognition. Please stop confusing aspergers with autism. They are so different.

help!!! My son is driving me crazy - - Mar 9th 2010

My Adult son (30) is a high functioning autistic male. He has absolutly no goals, no friends no enthusianum. His Appitite is terrible. He really needs help. Please contact me @ 303-935-2455 or 720-569-7618 my name is jennie

I'm sorry - Citizen - Nov 13th 2009

for those who have had bad experiences, and I want you to know that this message is not meant to condemn any parents, but to offer them hope. I am an autistic 35-year-old woman. Although I learned to read at 2 years old and engaged in detailed imaginative play (repeating the same songs or play scenarios again and again, though, which was probably annoying to some!), I wasn't really able to interact "correctly" with other children. Also, although I knew I was supposed to hide it, I could not always keep myself from flapping, rocking, or verbally stimming. When I got overwhelmed, I'd cry easily and if I couldn't be alone immediately at a moment of intense stress sometimes I'd bang my head to calm myself down. I was always the first to comfort a younger child or one who was crying, but friendships were hard to maintain because so many hidden rules govern interpersonal behavior, even in elementary school. And I was "odd" and had trouble keeping myself tidy or from saying something insensitive by mistake. Adults were boggled by the impossible contradiction that was me: intellectually ahead, but socially falling further behind every day. I was singled out for bullying by children and discipline by adults, because my attempts to engage with others (or to disengage completely!) were read as freakish or defiant behaviors. I became intensely depressed and thought about suicide as early as the age of 9. What saved me was that in 7th grade I became determined to learn how to talk to people and make friends. At the same time I switched into a school that had a large proportion of smart girls who enjoyed being "weirdos", liked science fiction and absurdist comedy like Monty Python (I learned to "be funny" by repeating dialogues from the show with my friends), and didn't judge me on my awkwardness as much as more "sophisticated" girls had.

It wasn't a smooth road. I have struggled with misdiagnoses, drug abuse (for some autistic adults this becomes a way of coping with the terrifying anxiety of being in social or work interactions) and the difficulty of conveying to others that yes, I am trying, I do care, I want to do things right -- BUT -- I have accomplished a lot. A 4-year degree (and most of a Master's), successful long term friendships, a loving relationship with my family, and a job that challenges me to learn more every day. I have even been in love, which autistic people actually are capable of, contrary to popular rumor!

I still soothe myself sometimes with repetitive movements, or, more often, by making an odd noise to stand in for when I would like to speak but cannot get through the autism in order to do so correctly. I still do get overwhelmed if I am forced to interact sometimes. I do withdraw into myself. I sometimes use "scripts" in everyday behavior so that I can be sure to do things right and not make people uncomfortable. I don't drive, not because I can't, but because traffic is a little much to deal with.

I enjoy reading, writing, dancing, and having conversations about all sorts of things with intelligent people. I have lived independently from my parents since I was 27, and without a roommate since the age of 30. I don't take meds.

Although the road has been harder for me than it would be for a neurotypical person, autism is not the worst thing in the world, and even a headbanging little girl can grow up into a woman her parents are proud of. And who is OK being herself. And who has a self.

Take care.

Starting a Group Home - Barbara Sanchez - Aug 16th 2009

Hello,  My friend and I would love to start a group home.  We have no clue where to begin and what classes we need to take to get started.  Could you possibly give us some guidance in this leap of faith.  I know where my heart is and I have a dream...please lead me to the materials or person that can help me.  Thanks and God bless you.

I love her, but - Maria - Jun 29th 2009

I would like to know if there are any safe and resaonably priced group homes where a young lady can live in her own room but share the house with others like herself.

My daughter is 30 years old and she has her own mind, it is just that she is not actively living a life which I can consider normal.  I constantly have to remind myself that this is how she will be always..

It seems to me my daughter takes and takes and takes from me and never gives back. That's autism for you. But at age 30, it is unbarable to sit next to a person for hours and not be able to get into their mind. Not be able to have an intelligent conversation. Not be able to rely on her. Costantly be afraid for her safty and be afraid if she says something off the wall...

I would like a break from her. I would like know if there homes or I would like to start such a group home if there are enough volunteers to help out. Please email me if you know anything. Thank you

village concept for adult autistic - Spencer - Dec 6th 2007
Texas, I read you comment about your 20year old and would like to talk some more. We are in the process of starting a new concept for adults with autism and we are looking for input as we bring our dream of developing this idea. Please email me at agemployment@aol.com We are located in north Texas and happy to discuss with anyone interested in coming up with a solution for a better quality of life of our loved ones with autism and other handicapping conditions. Spencer

i don't know what to do? - Rayla Julia - Jun 25th 2007
i will  be 35 years old in one day 26th of June. Wow 35 years of suffering with Austism.  Back in 1972 no one knew what it  was,  I was to smart for Special ED. to weird for Normal Classes.  i remember my childhood I was aware of  very little because I didn't know things  like other Kids. My mom said I was just sensitive. I made it on my own Ok, but in 2001 I found out after thinking it wass ADD, Bipolar, etc....I was work with Austic children at the time, and I read the discription of it and said that's ME! I had this dream world I was constantly stuck in, always trying to feel people, and not feel people at the same time, and extreme anger, andI couldn't talk, but somehow I managed to talk when working.  I went to try to heal it with alternative medicine everything seemed find I was bellydancing, Djing, and Driving, then I went on vacation To Washington State. I meet two kinesologist from Austrailian.  They kidnapped me a did things to brain, told me to talk to Spirit and I had to learn something or I couldn't go. I asked is Spirit "God" because I was Catholic. They said yes. So I tried, This Spirit began attacking my brain, it told me to leave the house, I felt they were freaky so I did what they told me a was allow to leave. But the attack on my head didn't stop, now I'm brain damaged and can't drive, work or go to school. The "Spirit" attacked me untill I had no words or music on my brain, infact I don't know how I'm typing this... Now I like to find some medicine to make me less angry over a situation I had  no controll. Watch who you trust in alternative medicine.

Two boys with Autism - Farooq Nasim - Jun 24th 2007
Yes. Even one boy with autism is a life sentence for the parents. Some unfortunates end up with two or more life sentences. All the support groups and optimism aside, reality is that it is the end of Parent's dream of ever enjoying the golden years. Any parents whose child is recently diagnosed with autism, should prepare themselves with eyes wide wet in tears in the loneliness. Only way to live is kill to your own feelings, act like a Zombie and do not think about future. (for the child or for yourself). Cancel all the vacations, do not plan retirement, and just fall in love with the innocent child who is acting like that for no fault of his own. It is a bleak picture but please "do not" blame each other (husband and wife) for the misery and absolutely do not divorce. It is the worse thing that you can do to the child. Only thing that can give you a sugar-coated comfort is the less likely chance of an autistic child to be involved in crimes because he has to be under constant supervision. 

need some help - T.West - Apr 17th 2007

not sure who else to talk to...My step brother has autism and he's 20 yrs. old now I do believe. He will never be able to live on his own but wants to and I needed to find out some info. on if there where special homes for him to live in where he'd be on his own presay but have the help right there like a group home? if anyone has any info on this please write back!

Texas

ok - fluffy - Jan 30th 2007
stinky moods come and go, try and look on the bright side by thinking about something good when it happens

I hope - dmo - Dec 19th 2006
As much as Im afraid of the future for my son who is autistic, I have great hope that he will lead a wonderful and fulfilling life. I will hope that society will recognize that he matters and he will be able to contribute other than sitting in ahome the rest of his life once I am gone I would tell autistic parents who fear adulthood for their children to continue to believe and be as optimistic as you can be. Its hard I know, but embrace their futures for them

adult autism - - Oct 29th 2006
i have had autism all my life,and it stinks when you dont have any control over it.my support people brags about how much i have improved my life.still,the bad things i did in the past have to be monitered .i dont want autism to control my life,but it cant be helped

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