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Study: Nearly 1 In 3 With Autism Socially Isolated

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Young adults with autism are often left out socially, with new research finding they are less likely to receive phone calls and invites from friends than even those with other types of developmental disabilities.

In a study looking at the experiences of young people who received special education services, researchers found that those on the spectrum are facing a particularly rocky transition to adulthood socially.

Nearly 40 percent of young adults with autism never saw friends and half were not receiving any phone calls or being invited to activities, according to research published recently in the Journal of Autism and Developmental Disorders. Strikingly, researchers said that 28 percent had no social contact at all.

The findings are based on data collected through the National Longitudinal Transition Study-2, a long-term federally-funded survey of students in special education and their parents. Researchers looked at responses to questions about social engagement within the previous year collected from individuals who had already completed high school. They compared the experiences of young adults with autism to those with intellectual disability, emotional disturbance and learning disabilities.

The social struggles of young people with autism were far more pronounced than those of other disability groups, the study found. While almost one-third of those with autism qualified as socially isolated because they never received telephone calls or went out with friends, fewer than 10 percent of individuals with intellectual disability and only 2 to 3 percent of people with emotional disturbance or learning disabilities fell into this category.

“Difficulty navigating the terrain of friendships and social interaction is a hallmark feature of autism,” said Paul Shattuck of Washington University who worked on the study. “Nonetheless, many people with autism do indeed have a social appetite. They yearn for connection with others. We need better ways of supporting positive social connection and of preventing social isolation.”

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Comments (32 Responses)

  1. KA101 says:

    Yeah, it’s tough getting out when non-autistic people don’t seem to want you around. I don’t have many social connections but those I have tend to be worthwhile.

    As for those better ways Paul Shattuck wants, well, there are autistic communities out there. I’m familiar with Autreat. The e-mail lists tend to be reasonably active year-round and the annual retreat/conference offers a lot of opportunity for social interaction.

  2. Gregory Desrosiers says:

    I’m from Montreal and have AS, but am taking efforts for me to get out of my stigma and be engaged a lot more.

  3. Glen S says:

    Interesting how it is always the other guy’s or girl’s fault. At some point all individuals must take responsibility for their behavior. High functioning individuals with autism need to be seeking ways to “improve themselves” just as every other well adjusted adult.

    In short, stop laying the blame on everyone else’s doorstep.

  4. Whitney says:

    Glenn S,

    It shows that you lack empathy for people with AS. The problems is not socializing is the lack opportunities to socialize. Social cues are not acknowledge automatically for high functioning autism easily when it comes to non-verbal cues. The other thing I hate to say this human society values high level of eye-contact to communicate socially. For autistics this is night mare scenario but there are things that can be done. Club activities are crucial for people AS develop through group hobbies as you said. Group hobbies are the reason AS willing to socialize but we do not socialize because we need to. Socialization is important but for us does have to be logical reason to have a need to do so. I mean I been to clubs with my sister to be honest with you to me it was pointless waste of time.

  5. John Bowen Brown says:

    Glen S., Autistic people are not like just any other well-adjusted adults. It is a neurological condition and your comments lacks an understanding. Some Autistic people are neurologically incapable of being like other well-adjusted adults while others on the spectrum are

    John Bowen Brown II

  6. marie camp says:

    I am a very fortunate Mom. The Hope House Foundation takes care of my son, he lives independently with supported services and one thing as many other things take him to socialized events. He probably prefer just being at his apartment but we believe this is for the better good.

  7. Whitney says:

    Marie Camp

    How asking if your son likes being alone in apartment? Never assume what people like or don’t like being alone. I had parents assumed my likes or dislike they were wrong at least 90% at the time. People assume AS means that they have no emotional dislikes or likes.

    In general this society is so lets say discrimanate and bigoted to anyone different. It people who have AS are asked to put up with the Neurotypicals and accept handout that society provides them. Without Aspergers there will be no advancement in science, computer, technology and art, Now if want to cure what the innovative society make where it does not grow that is your call. But science in the Brain Tank studies has shown post-mortem that Autistics brains are structural different. You can not alter the structure of brain or even prevent on the level genetics and if did it would be the thing that brings about the autism which makes society grows.

    Autistic like symptoms are believed in Thomas Jefferson, Marie Curie, Vincent Van Gogh, Carl Sagan, and Albert Einstien

    Why not use the money to teach children and society in general tolerance instead of roboticize the human race and limit diversity of the gene pool.

  8. Glen S says:

    Whitney – Again none of what you say removes personal responsibility from the individual. It has nothing to do with empathy or lack there of. The training is out there for the taking, but asking society to change is illogical.

    A 43 year old claiming to have Asperger’s Syndrome, still living with mom and dad, and sucking SSI for all it is worth has no one to blame than herself for not holding down a job. Another’s unwillingness to socialize is not a societal problem. There are a lot of things that I find to be a waste of time. It is doesn’t mean they are. What is means is I find another activity which I find enjoyable.

    John Bowen Brown – No they are not! But that is why they have to work harder and seek help to overcome the skill deficits they have.

  9. Joyce says:

    Whitney:
    When you say “Without Aspergers there will be no advancement in science, computer, technology and art. ”
    that is not a fact. Not everyone who is or has been involved in those disciplines & contributed to their advancement has Asperger’s. That is a fact. I understand the point you’re trying to make, but get your facts right.

  10. fairlady68 says:

    As a person with high functioning autism/Aspergers, I can say that sensory issues often place limitations on our ability to socialize. Many of us just cannot tolerate what to us are the noisy, unstructured ways that many neurotypical people like to have fun. We may force ourselves into these situations, but our discomfort makes us unpleasant to be around, and so people just quit inviting us and/or we quit accepting the invitations.

  11. Joyce says:

    I think it starts in schools . Educating everyone that children with ASD are kids like everyone else FIRST! Take the time to get to know others at school .

  12. marie camp says:

    Dear Whitney, My son is not AS.; He is non verbal and tries very hard to use his I pad. He is 31 yrs. old and this the first time in his life trying to communicate. As a Mom who was told to have him put him away and won’t amount to nothing. Well, he works, he lives independently and whatever he achieves in life is the most rewarding and I feel truly blessed.

  13. MsAmericanPatriot says:

    Glen

    I am a 43 year old female who lives with her parents and am on SSI. I tried using Voc Rehab to get a job but they got frustrated at me. My own mother hated the way Voc Rehab treated me. It was them that told us that I did NOT have the social skills to hold down a job. So watch you mouth mister, because I have tried using the services out there only to be burned by them. They wanted me to give up wearing make up like normals do and my mom was like okay that is it with Voc Rehab. Also the paying job I did have that I was fired from I was driving myself to work every day. When fired they (Voc Rehab) wanted me to use those special transportation buses. Mom put her foot down then too and said I drove. I have even tried volunteer jobs and was fired from them because of my bad handwriting. If they had given me access to a computer and allowed me to enter the information that way it would be different. Nobody told me what I was lack or would tell what the problem was and my mom and I asked.

  14. Laurie Montijo says:

    Reflecting on the additional challenges is not failure to take responsibility. I do take responsibility for helping my sons learn the skills needed to engage with people, despite his personal lake of need to spend time with others. They are necessary to become a productive member of society, work, engage is higher learning, etc. Attempting to teach someone when they do not “get” the need, impact or, in my oldest son’s case enjoy engaging with others. His lack of emotions and other central nervous system responses that many of us enjoy when connecting with others are not a reality for him. His inability to understand, perceive, imagine the benefits of learning these skills are not real to him. Those components are necessary to motivation making it very challenging to engage individuals with the inability to use or perceive the benefits regardless of the multiple approaches to help them understand the need or the variety of interventions implemented. This boils down to them learning how to respond in specific circumstances appropriately. However, when faced with a new circumstance, the ability to select which response to use is lacking. It is important for everyone to understand the additional barriers to helping these individuals learn the skills needed to become productive members of the society by participating in work programs, social events geared toward this population in preparation for social interactions outside this population. It is heartbreaking to read the knee jerk responses and beliefs Glen S. expresses. These beliefs are exactly the barriers KA101 is referring to in the first comment about “non-autistic people” not wanting those with Autism around. Glen, it would be helpful if you learned more about what Autism is and how it inhibits one from becoming one who contributes to life, the community and those around them. Maybe you could get involved with the limited resources that help Autistic people get off or receive reduced SSI or other benefits as they gain employment. Contributions to those types of programs are particularly helpful as many families cannot pay for the comprehensive services needed.

  15. MsAmericanPatriot says:

    Glen
    I forgot to add that it was Voc Rehab that told me to file for disability. They are the only place to go here in my city for job placement if you are disabled. Getting it on your own is not easy especially if you lack in the social graces. I was dx by the University of North Carolina Chapel Hill’s pysch department. So it was not a self dx at all. Voc Rehab did NOT handle my case well at all. I was treated as an after thought because I was so high functioning. I want a working relationship with a job coach which I did not have. Each week it was a different coach which ever one could they get to go see me. I had no idea what the problem was. No one told me so I could fix it. I wanted the same coach to visit me each week and that didn’t happen and when I complained I was royally chewed out for complaining about the unprofessional behavior. So now you know the rest of the story.

  16. Whitney says:

    Joyce,

    The names I listed do have asperger like symptoms. If you read letters of the Thomas Jefferson, Vincent Van Gogh and even Marie Curie they all exhibit Asperger like symptoms. It was very specific when I used their names and if you want the name of book I will be glad to provide it for you.

    Glen

    I agree with personal responsibility to a degree but I disagree at the intolerance of this society where the emphasis is on personal beauty and social behavior. The fact the words is like saying ask a blind person if they can see? That how sensitive and emotionally aware that being social creatures for autism is that they are lazy. Calling a hearing impaired person an idiot because they cannot here. What you said lacks empathy for an person suffering socio-cognitive disorder that falls under Autism Spectrum Disorder.

    I was diagnosed with Aspergers Syndrome and I am not greatest empathic person there but even I know things are not black and white but shades of grey.

  17. Joan Sullivan says:

    My son is 29. At the time of his diagnosis we were told he was the 1 in 24,000. I would like to help develop social services for adults with ASD. I’ve had a unique perspective raising him before public knowledge of ASD included anything beyond ‘Rain Man’. He functions quite well and is able to give feedback. While he continues to learn more social function as he matures, it still remains to be seen if he will be able to live independently. Any suggestions?

  18. Leeanne says:

    Glen S.
    Do you know many people with autism or spent much time with or lived with them? Family member, etc?

  19. derek says:

    Its comes down personal responsibility. And good supports and willingness hold a job.

  20. Benjamin Crandell says:

    I find the whole stat to be true. Through having asperger syndrome and being an extrovert I am finding to initiate a whole lot of stuff that I do. It is just because of odd issues that people have with autism do. I find my self not getting the phone calls or inites to stuff. I had it all the way through school and most of my adult hood. I am now 34 and have been finding out and learning new ways to socialize for myself.

  21. Sonja says:

    Another study -funded with our tax dollars! (we’ve already PAID for it)- that we cannot access without paying $40 just to read it. Disgraceful. I’m getting pretty annoyed with Disability Scoop constantly “sharing” their brief interpretations of studies that the general public cannot without payment.

    Share ALL the information or figure out a way to provide better access to it.

  22. Whitney says:

    The problems with jobs is not the actual job itself. It the HR department. Part of the Job interview is maintaining good eye contact with the interviewee. With Austism Spectrum Disorder this is really night mare and eye contact lack there of is one reason we are severe disadvantage. It is part of Autism that eye contact is extremely painful. Saying Autistic or Asperger works in disadvantage because there plenty of applicants could maintain eye contact who may be more or even less qualified. HR people will say that this eye contact potential employee is critical for their job. To me there has be some better way to interview people and seeing they are qualified. The main hurdle most people would say it HR. Why do you think that 80% + are not employed. Most people can charm there way and shade the truth about their qualifications that part of social skills that are not native ASD.

  23. Glen S says:

    Whitney,
    The trouble with any such book about the social, mental, and psychological “inventory” of a historical figure is that it is speculation as best. It is illogical to assume these historical figures make for good commentary.

    Second, let me explain something I have addressed before. There is a pool of money. This pool of money is only so deep. From this pool of money society must pay for infrastructure, services, military, aid, etc. Even if we increase the depth of the pool, the increase must be spread through out our governmental system. After 25 years of experience in and around advocacy, when adults speak of tolerance and understanding, they tend to mean they want society to give, give, give, and give some more. However this is not only illogical it is morally incomprehensible and would lead this country closer to bankruptcy.

    The truth is that society’s “tolerance” of children with disabilities has never been greater. Trouble is adults with disabilities and their advocates are squandering this good will toward children by insisting of ludicrous ideas like ALL children with disability should be in any classroom or any employment should be at least at minimum wage. But what about children who are not best served in a “regular” education classroom. Or what about those employment situations for the the “accommodation” is to lessen the job requirements. Both of the above situations exist.

    In an attempt to get everything they want, adult advocates for individuals with disabilities are going to fail to get anything they actually “need.” And it is extremely import for society and the individuals in it to recognize the difference between our “wants” and our “needs.”

  24. Glen S says:

    Msamericanpatriot,
    I rather doubt we have the “rest of the story” as you put it. How did you approach your superiors? How did you lodge a grievance? How long ago did you last try to apply for a job? Have you attempted to better yourself by getting additional coaching, training, or education?

    These are the questions which must be answered before we have the rest of the story. At 43 years old, you are the only person responsible for you – not society.

  25. MsAmericanPatriot says:

    I had a job coach. They were to be the intermediary between me, HR and my bosses. With me never having the same one twice I didnt see my firing coming. It was up to the coach to tell me what was going on and what I was doing wrong and they never did. I was NOT allowed to make decisions in my employment situation. If I did file a complaint against the job coach agency with Voc Rehab I was royally chewed out by the job coach agency. So it was put up or shut up. We asked for additional coaching which was never offered. It took more than ten years for me to work up the courage to try again, I was that badly traumatized over how I was treated. I tried. I asked for help. It was society that failed me. Society is responsible for NOT being so narrow minded when it comes to people on the spectrum. They need to have better services for us on the spectrum so we can cope in their world. Also they need to quit trying to pigeon hole us. So therefor it isn’t my responsibility. I tried. Society failed.

  26. MsAmericanPatriot says:

    In the autism community there are two realms that are separated by the magical age of 22 years. Under 22 years, there are programs galore. Once you hit 22 you are considered an adult and programs are few and far between. What is out is abysmal when it comes to service when you hit 22. My story is just one of many out there. Eighty eight percent of autistic adults are either unemployed, under employed or too scared to come out of the closet for fear of repercussions from their employer. Yes employers will find a way to fire you even though it is against the law under the Americans with Disabilities Act. That act has no teeth when it comes to the intellectually challenged category. It is all about those disabilities that can be seen like blindness or being in a wheelchair. But being autistic can be just as debilitating if not more so than having say CP or MS because we can come across so normal like you never know unless we tell you. I have tried asking Voc Rehab to pay for additional schooling which they have refused to do so. Under the Rehabilitation Act that is against the law but I can not afford to take them to court. So I am stuck. We do NOT like being pigeon holed and we basically are by society when we hit that magical age of 22 years.

  27. F. Dang says:

    Glen S.

    You show a lack of understanding of the individual with a diagnosis of Autism. That somehow they are making personal decision to socially be the way they are changes the difficulty they are having,socially, from a neurological difficulty to one of being moral. They are making the wrong choice, they are doing this on purpose. The description you use that “they are sucking SSI for all it’s worth has no one to blame than herself for not holding down a job.” which implies that the difficulty holding a job is their fault. This statement shows your contempt for individuals with Autism and continues to make it a moral issue. You have no clue to what Autism is about. Go peddle your off ideas elsewhere.

    Regarding the study, one doesn’t have to be a rocket scientist to come to that conclusion, that individuals with Autism have difficulty making and keeping friends. If you watch children you will notice that they will pick up socialization skills as they grow and mature. Through their play and interaction with others they learn social rules on how to behave and act with other individual. The child with Autism does not have this capacity. You have to teach them a lot of skills that NT children pickup during their socializing with others. Another thing that happens is that individuals with Autism have difficulty with generalizing what they learn. If they lean a particular thing in one class when they go to another class they can’t transfer what they learned to the next class. Another occurrence is that person with Autism has a very restricted area of interest. Meaning that if a group of student are talking about a particular subject the Autistic individual will interject he area of interest, even though there is no relevance to what the present conversation is about.

    The other part to this problem is that other individuals have difficulty socializing with individuals who are different from the general population. with individuals with Autism they have certain quirks that hold others back. I have a 30 yo son who has Autism. He works and goes to the local community college. I watched him initiating conversation with his classmate and I see the expression in the classmates eyes that they want to end the conversation fast. One of the reasons is that his interest is so restricted and not too many people are interest that he bores them. Another reason is that is has difficulty with personal space which affects other. As a personal friend related to me ( he was in a class that my son was also in ) No one likes to sit next to him even though they really like him. When he puts his jack on in class others have to duck or get hit by the sleeve of his jacket or they are afraid that he might accidentally them as he puts on his jacket.

    The difficulty an Autistic person has socially is part of the Autistic persons disability.

  28. Hannah says:

    Glen S:

    Why do you seem to think it’s so wrong for society to help out those in need? No person is an island. Everyone needs help from time to time, and no one can be completely, 100% financially independent their entire life long (unless they were an heir or heiress from birth, that is). I’m sure you yourself have needed some financial help from someone else at least once during your adult life. So why pick on others who need financial help, then?

    Oh, and just FYI, I have Asperger’s, I’m 25 years old, and I’m on SSI. And that doesn’t mean squat in terms of whether or not I’m trying to overcome my disorder. It just means that, at the current time, I am incapable of holding a job, and need a little extra help as a result. Would you rather that I had no income whatsoever?

  29. Glen S says:

    Hannah, SSI is not charity. If you were going to a civic organization or a church and getting assistance that is one thing. But the community of individuals with disabilities seems to believe that it is the humane thing for society to be forced through the tax code to have money removed from the “top” of their hard earned salaries and given to individuals they don’t know.

    No want sitting there typing that statement means is that you are intelligent enough to earn a living.

  30. Glen S says:

    As adults, sure they are making a personal decision. If one can stay up late at night and type at a computer, that one is capable of holding down a salaried position.

  31. Robert M. Howley says:

    My Kathy is non verbal as are many with autism. SHe is 22 and she naturally she does not get phone calls or have any meaningful friendships. She is sociable and likes to be with other people. It is much different for an Asperger’s person. It is sad for me as she will never marry or have a conversation or read a book.

  32. Paula C. Durbin-Westby says:

    Did the study, which used “data from the National Longitudinal Transition Study 2,” have questions for people about whether or not they WANTED a bunch of phone calls, to go out socially, etc.? I have the lowest need for social interaction of any of the local people I know, but I communicate with people every day via Internet. Before you diss the internet, I’d like to point out that many of the closest friends I have now “in real life” are other Autistics I met on the Internet. I am certain I would “fail” one of these studies, yet I find my social life, as determined by me, to be quite adequate, My community of Autistic people and some parents/family members/supporters has extensive interaction and connection worldwide. We meet at gatherings like Autreat, at conferences, and sometimes get together in person (which is more difficult for me because of where I live and my lack of financial resources). I am doing a presentation about Autistics soon which features, as part of my slide show, a number of Autistic people in various gatherings and social situations of their own choosing.

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