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People with milder forms of autism struggle as adults

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Deborah Rudacille
8 September 2011

Blurred boundaries: Social skills have a greater impact on quality of life for people on the autism spectrum than do any specific diagnoses.

Contrary to popular assumption, people diagnosed with so-called mild forms of autism don’t fare any better in life than those with severe forms of the disorder. That’s the conclusion of a new study that suggests that even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.

In fact, people diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS) are no more likely to marry or have a job than those with more disabling forms of autism, according to a Norwegian study published online in June in the Journal of Autism and Developmental Disorders1.

Early intervention has the potential to alter this trajectory, say experts. But until today’s children with autism reach maturity, it will be hard to say how much behavioral intervention at a young age can alter the course of their lives.

“The implication of our findings is that the consequences of having an autism spectrum disorder with profound difficulties in communication skills and social impairment can’t be compensated for by either high intellectual level or normal language function,” says lead investigator Anne Myhre, associate professor of mental health and addiction at the University of Oslo in Norway.

These findings provide support for the proposed merging of pervasive developmental disorder into the autism spectrum in the DSM-5, the edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) set to be published in 2013, the researchers say.

The new edition of the manual takes a spectrum approach, absorbing the separate categories of childhood disintegrative disorder, Asperger syndrome and PDD-NOS into the broad category of autism spectrum disorder. The draft guidelines note that symptoms must appear in early childhood and affect everyday functioning.

“I’m glad that the authors see this as support for the DSM-5 proposed definitions,” says Sally Rogers, professor of psychiatry and behavioral sciences at the University of California, Davis’ MIND Institute. Rogers is a member of the neurodevelopmental working group revising the diagnostic criteria for autism.

Single and disabled:

Myhre’s team investigated marital status, mortality and criminal records, and disability pension awards for 113 individuals who would meet contemporary criteria for autism. Of that number, 39 fall into the PDD-NOS category. More than half the participants — including 23 of the 39 with PDD-NOS — have an intelligence quotient (IQ) of 70 or less.

All were treated in the children’s unit at the National Centre for Child and Adolescent Psychiatry in Oslo, Norway, between 1968 and 1988. The researchers tracked these participants using government-issued identification numbers.

They found that by age 22, 96 percent of the group had been awarded a disability pension from the government. Nearly all were unmarried — 99 percent of those with autistic disorder, compared with 92 percent of those with PDD-NOS. The crime rate for the group as a whole was little more than half that of the general population, although more individuals with PDD-NOS than autism had been convicted of a crime.

The study’s comparatively bleak findings are a surprise, say experts.

“The PDD-NOS group is generally better functioning, at least in childhood, so we would expect them to do better as adults,” says Sigmund Eldevik, associate professor of behavioral science at the Oslo and Akershus University College of Applied Sciences, who was not involved with the study.

In July, Eldevik reported that young children with autism who receive behavioral interventions in preschool have higher IQs and adaptive behavior scores than those who do not receive the intervention2.

However, the individuals in Myhre’s study grew up during a time when autism was typically diagnosed later in childhood, and there were few early intervention programs.

For example, autism was not classified as separate from schizophrenia until the release of the third edition of the DSM in 1980. And Asperger syndrome and PDD-NOS were not included until the DSM-IV’s release in 1994.

To address the diagnostic changes, the researchers used detailed descriptions of symptoms, psychological test results, school performance and other records to retroactively diagnose autism or PDD-NOS in the study participants according to DSM-IV criteria.

Eldevik says the changes in DSM subcategories would probably not affect the study’s findings, however, as clinicians in Norway generally use the International Classification of Diseases (ICD).

“The PDD-NOS diagnosis from DSM-IV is very similar to the ‘Atypical Autism’ diagnosis from ICD-10, which we are using in Norway,” he says.

What’s more, other studies of individuals with PDD-NOS have turned up similar results. A 2009 European study reported that few individuals with PDD-NOS, autism or Asperger syndrome live independently3. That study found that antisocial personality disorder and substance abuse are more common in the PDD-NOS group, together with the mood and anxiety disorders shared by all the subgroups. Although all 122 people in the study have normal IQs, only 40 percent were employed at the time of the study, and 84 percent had never been in a long-term relationship.

Limited opportunities:

Relatively few long-term studies report on individuals with PDD-NOS but, in general, research on social and employment prospects for people on the autism spectrum are not encouraging.

For example, a study published earlier this year found that in the U.S., young adults on the spectrum who do not have an intellectual disability are in some ways worse off than those who do, as there are fewer programs to support their needs. They are at least three times more likely to have no structured daytime activities, for example4. Another study by some of the same researchers showed that 70 adults with Down syndrome enjoy higher levels of independence, more social opportunities and receive more services compared with 70 adults who have autism5.

This picture of limited opportunity for social engagement and growing isolation in adulthood for those on the spectrum is replicated by a study in April, which showed that more than half of young adults with autism had not gotten together with friends in the previous year6. Another study in February found that close to 40 percent of young adults with autism in the U.S. receive no services whatsoever after high school graduation.

In Norway, people on the spectrum are eligible for a government disability pension at age 18. Although only 5 percent of the Norwegian population as a whole receives this pension, 89 percent of individuals with autism in the new study receive it, as do 72 percent of the PDD-NOS group. 

The higher level of intellectual disability in the autism group may explain the lower levels of disability awards in the PDD-NOS group, says Rogers. “This suggests that interventions that increase intellectual abilities will lead to better outcomes,” she says. Although most studies suggest that those with higher IQs don’t necessarily fare better in life, those individuals did not benefit from the kind of targeted early interventions now available, which address both intellectual and social functioning, she says.

High-quality early intervention is the only treatment that has shown improvement in intellectual functioning in people with the disorder, Rogers says. As more individuals with the disorder are diagnosed and receive treatment early on, future generations may face better outcomes.

Early intervention is already leading to markedly better intellectual functioning in children with autism, says Amy Wetherby, professor of communication science and disorders at Florida State University.

“The whole landscape of autism is changing because we are better at identifying the cognitively higher-functioning individuals,” she says. “With good early intervention, most end up within normal limits [on intelligence tests].”

References:

1: Mordre M. et al. J. Autism Dev. Disord. Epub ahead of print (2011) PubMed

2: Eldevik S. et al. J. Autism Dev. Disord. Epub ahead of print (2011) PubMed

3: Hofvander B. et al. BMC Psychiatry 9, 35 (2009) PubMed

4: Taylor J.L. and M.M. Seltzer J. Autism Dev. Disord. 41, 566-574 (2011) PubMed

5: Esbensen A.J. et al. Am. J. Intellect. Dev. Disabil. 115, 277-290 (2010) PubMed

6: Liptak G.S. et al. J. Dev. Behav. Pediatr. Epub ahead of print (2011) PubMed

Comments

Name: Rose
9 September 2011 - 12:14AM

I have found that the typical developmental trajectory alone amounts to increase in IQ.It makes sense that as language skills increase, so do intelligence quotients, since IQ tests are for the most part language based. It has been my experience that picture based IQ testing, like the Peabody, also lead to higher scores among language impaired students.

Name: Kenton
31 July 2012 - 8:30PM

I will agree with some of that, but would add we adult aspies are often divorced because many are not diagnosed till older adult like me at 59. I tend to be face value over literal. My IQ tests were up and down. One i hd ot redoo because the form ws ocnfusing and instructions in 60s were not good for autistic minds. I still feel very ignored by the general mdicl community which seems like they just wish we would go away and some members of colorado GRASP feel the same.

Name: Missy
20 December 2013 - 3:51AM

I can't get help in calif :(

Name: Missy Simpson
20 December 2013 - 3:53AM

Please email me;
Dalcocer74@aol.com

Name: Deborah Rudacille
9 September 2011 - 4:31PM

Thanks very much for that insight, Rose, and thank you for reading SFARI.org!

Name: A person with PDD-NOS
12 September 2011 - 5:34AM

Funny how stigma/bigotry are not mentioned at all in this article. They're certainly quite relevant...

Name: Shree C Vaidya
13 September 2011 - 5:47PM

All these comes under the mental health problem.Thanks for the article.

Name: Mark Carew
13 September 2011 - 9:41PM

The raw statistics may be useful for guidance, perhaps more useful if aired in a 'shared public consciousness', charged to own and identify causation. It may be that an awareness of a new concept of 'civilized humanity' might be required to emerge, where the individual retains control of his or her own happiness. If society has no work for an individual perhaps this should be seen as a positive release from a form of slavery. Likewise the state inducements to procreate, or engage in relationships for 'civilization' sake may not of themselves contribute to happiness and fulfillment for the individual.

Name: Charlie
20 February 2012 - 6:52PM

I think it would make perfect logical sense to the individual, however not to the rest of the citizens of civilization- due to the pressure that the system exert on everybody as a whole.

Name: Kimberley
12 November 2013 - 5:53PM

I agree Mark. My son is 13 with autism. He will determine whether a "relationship" or marriage will make him happy. I truly believe that everyone connects and relates with people in different ways and he will decide if he wants a relationship. Not everyone does.

Name: Niall
15 February 2014 - 3:36PM

Whatever he decides, he stands little hope of entering a relationship if his poor eye contact, lack of awareness of social boundaries (some of which may be learned at a cognitive level, but others are much harder), or odd prosody are seen as "creepy" by those he finds attractive. His chances will be lessened further with his limited employment opportunities, when western societies place such a high value on having a job, especially when seeking romantic engagement.

Potential partners owe him nothing, of course, and he is highly likely to be marginalised by employers, potential friends and potential mates. What he wants will have little to do with the outcomes in the face of ostracism and marginalisation.

Name: Deborah Rudacille
15 September 2011 - 2:24PM

I once interviewed the eminent sex/gender researcher Milton Diamond who pointed out that 'Nature loves diversity but society hates it.' I think that comment certainly applies to these issues. Thank you all for expanding the discussion and highlighting concerns outside the scope of the article, but certainly relevant to the topic. And as always, thank you for reading SFARI.org!

Name: Jacqueline
18 September 2011 - 4:10PM

I'd like to know where my child fits in all this. He is 7 and attending an integrated school setting. Many see a lot of potential into his likely integration to society, but Autism professionals tell me every year during checkups "We can't tell, we don't know yet".

Parents need a better prognosis and categorization to know whether our high functioning kids belong to this group or not.

Name: Arthur
18 September 2011 - 7:31PM

Excellent article but it worries me. Our 23 year old son has asperger's syndrome. Since high school he has worked at a seasonal job for two years teaching skiing to children - which he was very good at, and tried college for a year. His intelligence is far above average and he has an unbelievable memory but his interests and life skills are limited. He plays piano and composes classical music. We are working with voc-rehab with the State but his high school offered him no transition plan. We feel like we are basically on our own trying to figure this out.

Name: Nance
23 September 2011 - 3:31AM

I'm right with you on this.... my child went through 1st - 12th in the 'gifted program', and was a National Merit Honorable Mention. He struggled greatly with college (a difficult task for these kids, especially in a larger school), and graduated after 6 1/2 yrs. He managed to work in a restaurant for 18 months (currently unemployed), and has lived in an apartment (which he can't manage alone financially or economically) for 8 years. He was never identified with anything more than ADD, but after LOTS of reading, we (as parents) figured out he has Aspergers. At 26 yrs old, we cannot find any psych help for him - all focus is on helping younger children (which is GREAT, but what about these young adults????. Applying for a job is overwhelming, and interview skills are non-existent. So now what do we do to help him navigate through life? He wants independence, has lofty goals, but has no clue what the roadmap would look like to achieve success. Friendships are waning (due to his peculiarities), and he get depressed from his life situation, not understanding why it's so hard for him.
It's a heartache to watch him struggle, but in all my internet searches in this area of my state, I cannot find guidance for him - or me! SO FRUSTRATING!!!

Name: Melani- MO
23 September 2011 - 2:54PM

I can relate to your comment. Our son was a late diagnosis. He also did extremely well in K-12 and is currently attending college. But these past few years have been very difficult. I have made hundreds of phone calls and sent emails trying to find some help for him. I was told repeatedly that the services available were for young children, or only to age 18. I understand the need to have the resources for those who are diagnosed early. However, there is a whole 'lost' generation of smart young people out here that can use some assistance! They want to work and live independently. It's so very sad to see all of this talent going to waste ... not to mention how heart-breaking it is for them to not be able to be included in society.

Name: Pamela
30 October 2013 - 10:04AM

I am in UK diagnosed Aspergers, ADHD, female aged 65, have BSc MSc. Couldn't do interviews. One thing that DID HELP, by accident joined group to teach (normal) adults early exercises for acting (as in actor)and these proved very helpful. Example: group stands facing in a circle with eyes closed and tutor taps one on back. All open eyes and have to guess who's been tapped. This allowed me to start looking at facial expressions in a non-threatening environment. Of course I dropped out before doing any real acting. Hope this helps. I worked as a technician in medical research, and many Aspies have lower level accountancy jobs. There is a book about finding employment for those with Aspergers, can't remember details, but try web search.

Name: Domingo L.
14 January 2014 - 2:01AM

Nance, we have a 21 year old with isolation issues. Thank you for sharing your story. He sounds like the kind of man I'd like my son to be. At least he tried. Best of luck.

Name: Ru
13 March 2014 - 7:44PM

Nance, my son is 19 and struggles with life, trying to understand why it is so hard for him. We feel the way your son and you do. Are there any organizations that help young adults with their social skills that do not cost a fortune?

Name: Greg Boustead
13 March 2014 - 9:01PM

Hi Ru,

Autism Speaks has a fairly comprehensive list of resources for adults with autism that might be worth browsing:

http://www.autismspeaks.org/family-services/resource-library/adults-autism

Greg
Community Manager, SFARI.org

Name: Crystal
7 November 2011 - 8:50AM

Your comment hits home for me. I have a son who just turned 20 and is aspergers. His high school didn't offer him a transition plan either. Like you we feel like we are basically on our own trying to figure things out. He tried college for a few months buts with no supports there for him he dropped, he is above average and an amazing writer and poet. He sits and writes beautiful poems and songs in a matter of minutes.

Name: Stacie Nankin
22 June 2013 - 11:40PM

Maybe your son can write songs for a living in the future.

Name: Becky
25 April 2013 - 2:38AM

My 20 year old daughter has been diagnosed with Asperger's, ADHD. OCD, generalized anxiety disorder, executive dysfunction, but has very high academic ability, save for average in mathematics. She is so aware of her differences and longs for friends and a relationship. Currently, she is attending a transitional program and is hoping to go to college. But how do you tell your child that the outlook for relationships and employment are not good?

Name: Blizno
19 September 2011 - 12:51AM

Arthur, that is unfortunate. Your son sounds like an exceptional person who could make a big impact on the world if his gifts were nurtured.

We have plenty of people who can work 9-to-5 jobs. We have too many of them in fact.
We don't have enough people who cannot adapt to the "normal" ways of living and who sometimes show us alternatives to our unquestioned "learn-work-marry-breed-work-die" life recipe.

We humans are brilliant hunter-gatherer animals. Our minds scour the universe for understanding. We cannot stop seeking knowledge.

We must never bow to ancient regimentations that place the blandest of us in control of our societies.
It is good that some of us can't stay silent and must blurt out questions.
Keep challenging us!

We humans are genius apes who never stop seeking answers. Some of us find it hard to fit in with the rest of us apes, but maybe that's a problem that we, as an endangered species (doing our best to destroy ourselves), need to face.

Name: Ellen, an adult with Asperger's
8 February 2012 - 4:07AM

No kidding. We have created technology that could depopulate our entire species, and are rapidly de-terraforming the planet. We need more creative ideas and diversity of ways to address and look at problems, including challenging long-assumed practices that most people take for granted.

Name: Tamm
20 September 2011 - 4:39PM

My 5yr old son is being assessed for ADHD and high functioning Autism, and I'm not liking this article! I feel like they are saying that there is basically no chance for a normal life if you have autism! What is so great about normal anyway?! My hope is that by the time my son reaches adulthood that there will be less ignorance and more knowledge and acceptance for Autism...maybe even a cure?!

Name: Rocky
20 September 2011 - 10:46PM

I find it ironic when you write "...acceptance for Autism...maybe even a cure?!" If you accept (high functioning) Autism, why would you want to "cure" it? Hopefully, you meant eliminate any unwanted parts of it. I for one, wouldn't have wanted to "cure" Einstein. Society accepting high functioning Autism would eliminate most of the unwanted parts of it for most people on the spectrum, I would think.

Name: Ellen, an adult with Asperger's
8 February 2012 - 4:11AM

Yes, exactly! I would love a cure for my insomnia and auditory processing disorder, hands down. I do not want a cure for the entire structure of my personality and who I am as a human being. What I want is for the rest to stop labeling me as broken, abnormal, and incapable of participating in society.

I have only ever had one close friend in all my life. Why? Were my social skills bad? Sure, but how could I ever practice them when every single kid in school bullied me every day on general principle for being "weird," starting in preschool? Makes it hard to learn social skills, let alone make friends. I do not accept the primary blame for what I went through.

Name: Norma
16 October 2013 - 5:21PM

Never believe an article I felt the same way reading it that they are saying that there is no chance for a normal life my son has mild autism pdd and all his life he has been fighting and making a difference in his life .I can tell you there is hope right now my son is playing football he may not be the best but he's strong and good at instructions and it makes him feel good to have friends and be part of something in school.My son also throughout school has had struggles with school work and making friends but he has turned it around and I think it has been a blessing the wonderful teachers and programs which allow him to really think about things everyday when he is learning something new or is improving I have hope that he will someday do something great with his life.Don't give up there is hope for all of us.

Name: Diane
3 April 2014 - 1:07AM

To Tamm, while this article is quite depressing and bleak, it is sometimes the facts. My 17 year old son is struggling at the moment with just trying to fit in. He had a difficult time from 3 - 7 years of age with melt downs and turned into a child you'd love to have around once the melt downs went away. However, as kids w/ ASD get into the teen years (especially high school), it seems everything changes. Your son is very young and you haven't seen half of it yet. There really isn't much help out there for teens w/ ASD and I've been told by another parent that while some social skills group leaders try to teach independence so the individual can live on their own some day, that when they are isolated adults, it can be a very lonely existence. I don't want that for my son, so he's always welcome with open arms to live with us forever if need be. I do feel bad for him knowing that relationships with women may not pan out. It's sad and there should be more adult social skills groups for ASD adults.

Name: Clare
17 April 2014 - 7:44PM

I was diagnosed with Asperger's Syndrome when I was 19, so obviously there was no early years intervention for me (although the education authorities were fully aware that there was something "not quite right" about me). Unfortunately, all my life experiences since leaving school (in the UK at any rate) have totally confirmed everything this article says. I don't know how I'm going to manage in years to come - I really do not want to have to claim welfare for my entire life, but what else can I do when society is so hostile to people with an ASD?

Name: Jay
21 September 2011 - 3:03PM

It saddens me that my AS son's (now 19) school system did not do more for him when he was younger even though we strongly advocated for him. He is now doing well as a sophmore in college and working as a cashier @ a gas station 14 hours a week. It is a struggle though trying to steer him away from isolating with his video games. A step at a time......He wears a T- shirt at time which states: "Normal is Overatted"!!

Name: fgdgjafd
21 September 2011 - 3:32PM

I do want a cure. I want my child, who is 7 has been recently diagnosed with ADD and PDD-NOS, to know what it is to know romantic love. I want him to find joy in meaningful work and go to college. I don't want him isolated, struggling and dependent for life. It's not a question of normal or not normal. He's high-functioning, so I'd hoped he could compensate for his disability. I'm upset about this study. But there's no point in crying over it. There's nothing to be done. We have to keep going.

Name: deself
20 November 2011 - 4:02PM

There are greater forms of happiness than romantic love, and better places for joy than "meaningful work," and certainly there are better ways to get a remunerative education than attending college. Your son can do all the things you want if they fulfill him, but if he finds fulfillment elsewhere, why complain? Granted, you will have a hard time relating to his happiness, but then, you are "normal," so you shouldn't have too hard a time relating to another person.....? Remember, on a certain level, we are all isolated and struggling and dependent. I wish for you and your son that he find a way to live that is no more isolated or difficult than anyone else's.

Name: T
10 February 2013 - 2:42AM

That is beautiful.

Name: Ellen, an adult with Asperger's
8 February 2012 - 4:01AM

It saddens me that the best so many parents can hope for is a cure; that so many have no hope for a society that accepts their children as human beings, whole and not broken, just the way the Creator made them.

Name: ADD
2 October 2012 - 3:40PM

You can do lot of things..You can put in extra effort to teach him and I am sure he will definitely learn slowly. The more you use the brain, the better it functions....So, I feel he should be thought some or the other thing continuously and he can be very successful..

Name: Deborah Rudacille
23 September 2011 - 1:33PM

Thank you, parents, for sharing. I understand your fears and frustration. I think it's important to keep in mind, however, that this study's findings are based on much older people, who never had the benefit of the early intervention programs and other opportunities for ongoing therapy that may benefit your children.

I've just come from two scientific meetings and I can tell you that some of the brightest minds in science are working on autism these days. The advocacy of people like Ari and Temple Grandin and others, who promote acceptance of difference will help too. So don't lose hope that your childrens' adult lives will be very different than those of the individuals in this study.

Name: Pam
26 July 2012 - 4:27PM

Thank you for sharing that. It is so easy to get frustrated and feel hopeless when you have an autistic child. You are right Deborah, there are so many great programs out there now and that means there is so much more hope out there. As parents, we must live in the moment and stay positive. We must keep working everyday to help our children become the best they can be, just as we do for our non autistic children.

Name: Arelis
24 September 2011 - 8:44AM

My son is 16 years old with autism. He is very self sufficient, and independent with his ADL skills. Everyday he tells me that he is going to be an accountant. I applaud him for his mitivation and future outlook. He has been fortunate in recieving early intervention at the school he attends. I feel that he will become the accountant that he wants to be. He is an exceptional teen with an agenda,autism is not going to get in the way of his future plans.

Name: ADD
2 October 2012 - 3:43PM

That is really great to know..I wish him all the best!

Name: Arelis
24 September 2011 - 8:46AM

My son is 16 years old with autism. He is very self sufficient, and independent with his ADL skills. Everyday he tells me that he is going to be an accountant. I applaud him for his motivation and future outlook. He has been fortunate in recieving early intervention at the school he attends. I feel that he will become the accountant that he wants to be. He is an exceptional teen with an agenda,autism is not going to get in the way of his future plans.

Name: moira
7 October 2011 - 10:52AM

I have an adult daughter with three children, doing her best to raise them in an nt world. The saddest fact in her life was being taken out of the school system at a very young age. I feel sad to read this report and the comments ... I also have seen in the many months I have searched for answers, that so far families are pretty well alone in finding answers for individual situations. For me, not quitting and not giving up are the only answers ... we can be part of making a difference to future generations, as well as our own.

Name: Kay
12 October 2011 - 5:34AM

I can understand the distress of parents of higher functioning autism spectrum children when confronted with news that their child may still "fail" in the conventional sense after all the time & effort invested. It's been my privilege to know a lot of autistic people, including those growing up functioning quite well in school and their special interests. However, even the "genius" IQ ones (who have done PhDs in maths or computing) cannot manage alone in society. One boy with a PhD can manage all the routine things associated with living in his own home- lists of tasks like "pay the mortgage, have my flu shots" guide him, but he cannot make true friends. People still regard him as a curiosity- they will help him out, but don't have that steady, predictable friendship with one or two others that most of us enjoy. I can tell when this boy hugs me hello, that he doesn't feel the same thing as others when he hugs- he's just a good actor. Inside his head I'm sure he is still puzzled by all this social "stuff" but is intelligent enough to conform because it gets him further than resisting would. It's sad, but I think it reflects the recent findings about unusual "wiring" in autistic brains- wiring can't be changed by taking different routes through as it can in computers, because in people the wires between places have dedicated programming. We cannot rewrite the CMOS of the brain with early intervention programs. It might be a good thing if some people confronted the fact that there IS a deficit in autism that disables people at all stages of life, rather than saying they are "neurodevelopmentally different". Somehow people are "stuck" on the idea that autistic people can live normal lives, but whoever expected a visually impaired person [with a deficit in all vision at all distances] to be able to drive a car? The blind just accept they have a deficit and get on with the rest of life- as do their parents.

Name: Ellen, an adult with Asperger's
8 February 2012 - 3:57AM

So you advocate that we should accept that we will never have jobs or any independent decision-making control over our lives, and accept that we will be like children living with our parents forever?

Sorry, no. I want a life. I want a job and a grad degree. I want to be able to go outside the house on a Saturday. I want the right to decide how independently I want to live, instead of being excluded just on principle.

FYI, blind and paraplegic and deaf people also want jobs. Most disabled people don't accept the idea that we should live as recluses inside our parent's home and never go outside. We are disabled, but we aren't invalids or vegetables.

Every person has strengths and weaknesses. Our weaknesses are not well tolerated by the majority. As Temple Grandin has pointed out, changes in society can and do impact how disabled people on the spectrum are. Disability is not inherent, it is socially constructed out of the total spectrum of human differences.

Name: Lydia Wayman
25 October 2011 - 2:54AM

The sense I get is that the author of this article looks at things as if people with autism are missing out a on a "normal" life. I'm 23, moderately autistic... college degree/genius IQ, partially verbal (mostly type to communicate), self-employed speaking and writing, unmarried, and really only have friends online. I can't imagine life any other way and don't feel like I'm missing a thing. In fact, I wonder if typical people aren't the ones missing out. Just because I want different things in life and define "sucess" and happiness differently doesn't mean I'm somehow less than or missing out!

Name: Pam
26 July 2012 - 4:34PM

To Lydia Wayman,
My son was recently diagnosed with PDD-NOS. Hearing your story makes me smile and gives me such hope for him. I think you hit the nail on the head. You feel comfortable in your skin and like life just the way it is. You may have the better life...you are happy and content! That's what I will teach my son....to embrace who he is and love life. Thanks for sharing...you have made my day!

Name: Ellen, an adult with Asperger's
8 February 2012 - 3:52AM

This study only makes me feel more depressed about my future. I'm 26 (almost 27) with a Bachelor's degree and quite capable of working, but I can't get work and live with my mother. I'm lucky to live in a state with some services for people, but it's not much.

This article does not address where the obstacles come from that we face: part of the problem is the bigotry and prejudice of neurotypicals who do not want to include us or hire us, or label us abnormal and want to push us into institutions where they won't have to look at us. I am capable of talking, working, and making friends, and if I never get married I don't count that a loss. But society must meet us halfway by accepting us instead of excluding us, and at least in the U.S. society is focused on prejudice and labels and "cures." It's hard to make friends, for example, if nobody my age will look at me or speak to me.

I want a cure for prejudice and exclusion, not for who I am as a person.

Name: W, an adult with Asperger's
29 March 2012 - 9:49PM

Parents, don't give up hope! I have Asperger's with comorbid ADHD and OCD, and I have only been diagnosed with ASD recently (I am 27). Despite having to constantly intellectually analyse social situations to give an appropriate response and having practically no friends, I have been fairly successful in life in other areas - having graduated from the top university in the UK and am now working in investment banking. It is possible to learn to cope and adapt if one is motivated enough, but I have accepted the fact that it will be very hard for me to find someone I could communicate and connect with naturally without putting on a "normal" front that I do every day. For me, social and emotional development was much delayed and was particularly conspicuous during my adolescence years and early 20s, but these areas started developing again when I was in my mid-20s, so I am catching up with the rest of the population. Even though I will never completely "catch up" socially and emotionally due to the lack of instinct in these areas, I believe I could achieve success and happiness in my life. From what I have seen so far, I think I might be an outlier amongst autistic individuals, but I believe this is by no means unachievable!

Name: Tim
17 August 2013 - 8:59AM

Thanks for this comment... This article was very informative and I enjoyed reading it, but it ended in a discouraging tone. I'm 25 years old now, and I thought I had Asperger's Syndrome, but it turns out I was right at the cusp, and therefore diagnosed with pervasive developmental disorder, instead. During my childhood, I didn't receive much emotional support since it was really difficult for me to make friends and connect with others. I realized I had severe social impairments and communication issues during my later years in college. I know I have to play catch-up with the rest of the general population as well, and I may never reach the social/emotional standard which society imposes on the individual, however, creating a happy, successful life will not be out of the question. I'm motivated and hopeful to improve, cope, and adapt with my circumstances.

Name: Hanan Almasoud
30 March 2012 - 11:46PM

My PhD is in supporting adults with HFA at universities and colleges.
Hanan Almasoud- Lecturer and researcher at King Saud University

Name: Lance H
10 May 2012 - 3:04PM

I was recently diagnosed with autism now near 50 i'm am jobless unskilled for the work force and nearly homeless i grew up in a lower middle class family and the illness was overlooked. I think too much emphisis is centered on the "children with autism" its just "milk carton advertising" for the illness its really the adults that need the immediate care sure maybe there are some success stories for autistic adults out there but if you dont have the family support it magnifies the problems greatly. I live in USA and right now it is very difficult to get diability which i feel would be best for me. I'm very angry at society and scared for my future and sometimes consider taking my own life. I just want to survive, but in this society its the non autistic people who are fools.

Name: Helen
23 July 2012 - 6:55PM

I'm autistic and this has really scared and upset me. Really desparate to succeed.

Name: Billie
22 August 2012 - 7:13PM

What about Einstein, Marie Curie, etc.? Were individuals of the milder still catagory tested at all? 23 of 39 is a large percent. I feel you need more individuals than 16 to represent the other group that seems to exist. I think there needs to be further research before a definite conclusion has been reached.

Name: Janet, parent and educator
14 October 2012 - 3:49AM

I am a special education teacher and am the parent of twin boys who were diagnosed with HFA as young children. They have not met the diagnostic criteria for autism since they were 5 and were mainstreamed without support with little difficulty due to their high IQs and academic achievements. I believe they will struggle in high school, however, and I am worried. I've been trying to steer them in this last year of elementary school toward extracurricular activities that they can continue in during h.s. such as the science olympiad and math competitions so they can make friends with like-minded kids. I also spend a lot of time trying to help them structure their time. I am not losing hope. I am heartened by biographies of successful HFA adults such as Tim Page and Daniel Tammet. Also by several men in my ex-husband's family who have mild forms of autism who have very successful careers in academia and science. If you are the parent of a HFA child my advice is to throw EVERYTHING you have at them when they are very young. They should spent every possible minute with typical children. Open your house up for playgroups, enroll your HFA child in enrichment classes and send the babysitter with him/her to facilitate social interactions and manage behavior. I went into a lot of debt doing this and it was worth every penny. Don't count on your school district to meet the needs of your HFA child because they will not. The resources, generally, go the more disabled child. I a hopeful but will accept whatever the future holds for them and me.

Name: Tammy
21 October 2012 - 3:55PM

Agree with those who have had this a long time and it is starting to beat us down. Sure, when we were young, we were different and kookie and accepted now and then. I am almost 50 and it has been hell. The struggle has not been worth it. The amount of energy I have expended in trying to finish my master's, trying to work, tying to make a relationship work....trying all the time and all failures.

This disorder is as bad as anyone's schizophrenia, yet no one help us. In some countries, they don't even try.

Name: Catie
28 December 2012 - 3:47AM

I very much beg to differ I was diagnosed at much later I believe full heartedly that if I was diagnosed as a child I wouldn't have struggled as much over the years. I believe it's peoples perceptions of difference, uniqueness, health and mental problem, or just being odd or unusual that make people think down upon. I was diagnosed with moderate functioning Autism and rigid thinking at 18. I had slipped through the cracks for very long I may not have many accomplishments as others but what makes me special and every person that struggles with any problem rather emotional, social, health. Its your mind set if you think it wont happen than your already out for the count. Even if your not sure work at you and always believe you can do as much if not more than others. The ability to do it is there you just have to believe that you can do it. I have to work harder for things than "normal" people. I always have and always will but even if statistics are against me to marry. I still have many years to find the man out there that can handle my differences. I think that autistic people have just the same chances as anyone out there to get married and like every relationship it will be hard. I believe it has everything to do with not your ability to conform but what makes you unique. Autism is a struggle its hard to describe the everyday struggles for me and others that are on the ASD. Any relationship is hard but if you want it enough its possible. I am 20 years old no I am not married one day I will despite ridicule marry and have children. For any other autistic people out there don't conform to what people think you should. Be yourself and do what you think is best. I personally have fought longer when my sisters seemed to be very social people. I may not have a degree like the person who wrote this article but I don't care odds can be beaten. I have come very far and am learning social skills it may be hard or look as if someone is making it worse than it is. every person with an ASD is special although different sometimes different isn't always bad. I don't agree that anything is set in stone so for any one out there wishing to change anything stand up for what you feel is right don't be afraid to not blend in. I am autistic I didn't go to college right after high school. I don't have a degree but I am learning social skills and non-verbal skills that come natural to many people. It's tough, hard, and difficult But sometimes I can see the difference and am learning to cope with my development disorder and have done much reading. I finally am able to heal myself and learn new things. At the end of the day it is worth it especial since I have accomplished more than many thought possible. So I don't agree that learning social and non verbal cues is useless.

Name: Jenine
5 February 2013 - 1:13AM

I am so glad I'm a young high functioning Autistic instead of one who's in their '40s, '50s and beyond. When I first read this article, I was a little confused as to what it's trying to say. I'm 20 soon to be 21 this year and I have to say that I'm definitely working on my way to independence. I hope to be able to earn a steady income from home someday and maybe get married and have a family. So, I definitely gotta beat the odds. Everyone may be expecting me to fail or give up, but that will never happen.

Name: mplo
17 September 2013 - 3:31AM

Jenine; That is a lot of crap, and it's extremely insulting to autistics who are in their 40's, 50's and beyond. I know plenty of people my age with autism who've lived independent, normal, productive and full lives, so don't get feeling too snotty...or virtuous. Thanks.

Name: Jenine
23 February 2014 - 9:40PM

I wasn't trying to be snotty or virtuous. But, it seems like this article or any article on Autism no matter who the news sources are from, seem to discourage anyone who has a form of Autism. Everyone loves to dump on Autistic's and assume that most of us won't amount to anything. I made this comment because I know how this awful society works. I'm sure there are Autistics that are up there in age that are doing very well in life. Just look at that famous Aspie Temple Grandin who's in her 60s. She's practically paid to calm animals down just before they're taken to the slaughter house.

Name: aunte
6 February 2013 - 5:03PM

Yes a discouraging article. Bottom line, like yourself and be comfortable with who you are. My nephew has "mild autism" He's funny, smart, has an amazing memory and is very inquizative. Yes he's a little "quirky" and not always socially appropriate. It's the other children, even in kindergarten that are mean, that is the bigger concern. My own children were DX with Selective mutism, and my other has ADHD, anxiety (possibly bipolar), it is a tough road. The parents need to stick together and support the child, accept them and give them every opportunity to socialize and feel loved. The new movie, silver Linings was funny and sparked alot of conversation in our home. There are HS and colleges with ADHD programs but they are very expensive. Yes there needs to be more services. Until we hired an educational consultant, our school system could have cared less if my son succeeded in school. It is unfortunate that the schools need to fear a lawsuit before they will help a child! If there are no support groups, you can alway reserve a rom at your local library and put an ad in your local newspaper to start your own support group! It is wonderful to not feel alone in this sometimes crazy world!

Name: a sad mother
13 February 2013 - 3:49AM

my daughter is 19 yrs old. She has always marched to her own beat and played outside the sandbox while all the other kids played inside. I had to teach what "it's raining cats and dogs" means and in high schoolshe didn't know what "Liar,liar pants on firer" means. But she is so amazing. Her heart is so big and beautiful. Every friend she has loves her...she doesn't judge or say unkind words. But she knows she is different. Always has and always wanted an answer no doctor could label her. I helped her at a young age understand and adapt. But now she wants an answer. She has tried to overdose twice...and has turned to God to make all her decisions. She is in ICU right now because she overdosed. And she is 19 and the hospital will not let me know where she is or what is going on. I found out where she is ans offered information and they don't want to know her history. what should i do?

Name: a sad mother
13 February 2013 - 3:53AM

she was diagnosed with PDD-NOS last year through her determination of questions of what was wrong/different with her.

Name: becky
16 February 2013 - 8:33PM

Dear Sad Mother.
the confidentiality laws in this country have gone too far...try to find a Mental Health Attorney in your area (call NAMI for help) who can help you and your daughter. Also try to talk with a hospital social worker to intervene with the medical staff on your behalf...most ERs want to know about preexisting conditions.

Name: Harry
7 March 2013 - 1:26PM

I am a 44 year old man recently diagnosed with PDD-NOS and about to undergo formal testing to confirm Asperger's.
It has been such a relief to get diagnosed. I had become convinced I was just an ''unlucky loser'' after failing to reach any of the normal life goals most people have.
I have a history of frequent job changes and long periods of unemployment. I have had only one serious relationship, and go for years between dates.
While some may find this article depressing, I find it incredibly affirming. I'm not actually an ''unlucky loser'' after all--and I'm not alone in my situation! I feel like running off 100 copies of this article and sharing it with everyone I know.

Name: senior adult
22 March 2013 - 1:07PM

I recently passed my 50th birthday. I have always known that I am different. I asked physicians few times, but I am borderline and received only a few vague labels. I have a very high IQ, and numerous degrees. Most of my difficulties center around oral communications and social interactions. For short periods of time in a predictable environment, I can pass for normal. Job interviews are easy. Most questions can be answered with memorized sentences. Working eight hours a day is hugely stressful because of the social demands. I live a reasonably "normal" life by the world's standards, but do not live up to the potential of my intellectual abilities. So, would I gain anything by getting a formal diagnosis? The medical world seems to have little to offer me.

Name: midlife guy
12 April 2013 - 5:38PM

I am wondering much the same as senior adult above. I am in my mid-40s. I had a miserable childhood, suffered from depression, being bullied at school, difficulty making friends, etc. I seem to have most of the symptoms of PDD-NOS. I have never held a job working for someone else more than a few months. Fortunately, I am self-employed as a lawyer but dealing with clients is exhausting, so I spend most of my down time alone. My wife is frustrated that I am so "boring". I believe a diagnosis would help at least in the sense that it would explain my personality and behavior. And, as I have one biological son, I can look out for any problems he may develop.

Name: Shylo
22 April 2013 - 1:33PM

i am a 25 year old man who is rather confused. i can relate to most of the symtoms of mild autism. could anyone tell me who is the most suitable type of professional i should see where i can be tested?

Name: honeyb
18 May 2013 - 6:28PM

I can tell people for fact that being higher functioning or aspergers works AGAINST you. People think that just because I have a BA degree and can speak, it must not be 'that bad.' Well guess what I still live alone, never dated, and cannot find a job at 33. All I've had were part time retail jobs. I just get sick and tired of classic autism getting all of the attention and women with A.S. are invisible to the community.

Name: steven
8 June 2013 - 1:28AM

With the economy as bad as it is, you definitely aren't alone in not being able to find a job, but there are work-arounds for that, as well as the rest. A little background: I'm a 66-yr-old aspie who only figured out that all my lifelong strange quirks had an actual name a few months ago. No sort of "treatment" ever, tho given the abysmal lack of understanding in the 1950s, '60s and '70s that might be a good thing. No education (my parents thought I wasn't worth the cost, tho I did apply to university after high school and was accepted). After being semi-homeless for a few years finally managed to get a blue collar job thanks to a short-lived government training program in the early 1970s, started my own artsy small business around 1980 which is still going and at least paying the bills, was actually married for about 25 years before she finally moved out about 15 years ago. Yes, I really am quite boring, tho now I seem to prefer being alone anyhow. The point is, it is possible to be different and still do interesting and fun things with your life. Don't take your education for granted, but do take your passions and run with them. That may sound trite, but given this very constricted format of a website comment board, that's what it boils down to, and it seems to have mostly worked for me.

Name: Sheri
26 September 2013 - 6:44PM

honeyb, I agree with you! :(

Name: Silentstorm
25 April 2014 - 2:26AM

I feel for you honeyb, Autistic women seem to receive a ton more criticism than us men.

Name: Veronica
9 July 2013 - 3:32AM

Where can you get tested for Aspergers or high functioning autism?

Name: Sangelia
24 July 2013 - 6:03PM

You can ask for a referral from your doctor. It is possible that your doctor might know of someone who can do the testing.
I had to be in my case, referred to someone who specializes in testing for it.
It was not a single session test. The doctor that did the test with me, has it in several sessions of Qs & As.

Name: Sangelia
24 July 2013 - 5:58PM

A few years ago I was finally given my answers to something my mom took to her grave about myself. The fact I am a aspie.
In my case, I spent nearly twenty years working a factory job. As in being a General Worker in a factory that did assembly line work.
Currently I'm a housewife raising the next generation aspie. As in my daughter has it too.
There are times I wish I could let my father know what a dis-service my mom did to our family by lying about my form of autism by her hiding the test results from us. But that is 49 years in the past she did that. As well as both of them have been dead for over a decade now.

Name: Born on Monday
26 August 2013 - 9:33PM

I am a 25 year old woman with PDD-NOS. I have a hard time making friends and I have such a hard time fitting in.
I am angry and depressed and I'm sick of it. I live in New Jersey USA. I was diagnosed in 1991 the year I turned three.
I feel as if I am getting worse. I am sensitive to noise. The bullying in school was horrible. The majority of the student population did not want to be my friends. I get suicidal thoughts and wish I wasn't born sometimes. I also have terrible OCD. I have no college degree. I still am at home with my parents who don't understand me at ALL!!!!! I wonder if I have ADHD too cuz I have such I hard time staying focused. I am constantly distracted between the thoughts in my head and the sensory output. I was with an employment program for a bit and I did some interview and failed. People don't know how to deal with me and they are afraid. I am a nervous wreck and live in fear all the time. I am miserable. So many things bug me that don't bug most people. My IQ is close to the normal and my vocab is NOT superb and I am NO savant either. I am in a lower middle class family. It's hard to get the right things when it's so ridicuolsy expensive. I am not getting much support but do attend a day program. I agree with Lance that the not autistic people are fools. They are fools who don't understand and are mean to people who are different. I want the right help and to be succesful and happy. I am jobless right now and stuck at home and I HATE it. I feel like I have no freedom cuz I'm different. I am also very negative and have no self esteem.

Name: NJ
2 April 2014 - 5:22PM

I think there's something in the water in parts of New Jersey that makes people mean, intolerant bullies. 99% of the students and at least half the teachers bullied me.

Name: Lisa Army mechanic
5 September 2013 - 5:01PM

I often am very boring in how I write and I appologise in advance..

I am a 39 year old female who for 38 years never had a clue I was on the ASD. I didn't even know the terms ASD or Asperger's Syndrome or any of the others. Only one year ago, after ending my US Army service did I find out that I might be on the AS because my sister has two autistic boys and said their autistic traits remind her of me as a child.

Also, after looking into it and seeking professional help, only a month ago I was diagnosed with Asperger Syndrome type autism and Sensory Precessing Disorder.

I spent most of my life as an oddity and an outcast by most people. In public school I was bullied and out-casted by other students and was very lonely. My parents did not understand me and sometimes were angry at my learning style, thinking I wasn't paying attention and was not trying hard enough. They didn't understand that I had to try extra hard. They were usually disappointed in me. Because of the alienation and ostracism, confusion, inability to express myself or be accepted by others, and the sense of lack of any control of my future (which seemed to be totally going the wrong direction), I had lots of anxiety as a child and teen, and also depression.

After graduating high school(a year late), I did some community college because there was a scholarship for poorer people. I did pretty well academically there, but had no clue how to make a career or be useful at jobs or job hunting. I was terrible at job hunting and interviews and spent a year totally failing at that. I finally got one job at the college and at a Marshall's store but I really am not good at retail.

At that time I failed at a relationship because the person wanted me to be more normal and socially adept and also hated my sensory problems to things like loud music, cigarette smoke, people talking when I am sleeping, and not liking hugs and physical closeness. He hated having to try to teach me some basic social and life things that school and family did not teach.

I was laid off from my job, and then I decided to not repeat wasting a huge hellish amount of time futilely looking for jobs in town. So I looked into the military because I knew they are eager for employees and will train people in a technical field and also give experience. In the Army I loved having technical work rather than socializing work like retail. I did not get along great with my co workers however because of my eccentricity and some of them called me crazy. I also did not learn as well as I could have in basic training and AIT because I learn differently and don't adjust well to crash courses. But I passed anyway, and I loved getting to work on helicopters. Also while in service, my anxiety level dropped down to low or non-existent because I had a job, a steady pay-check, a home, and a higher level job security way beyond anything back where I came from. Being weird would not get me booted from the Army. Also, I found out later on, that the regular physical training is also partly responsible for the lowered anxiety levels.

I ended up getting injured several times and these injuries interfered with work so bad that it finally made me decide to leave the military. Now I am going to the VA clinics to get my medical issues adressed and find remedies to get my physical problems alleviated enough so that I can start driving again and go back to school or try to find jobs (which thinking of this makes me anxious). Although a lot of things in the military were annoying, like the many smokers and loud partiers in the barracks, I liked the structure, the technical work and the somewhat sense of family or team spirit that the military provides. Now I am living with my parents now, otherwise I'd be on the street. It is depressing being with my family and back in the neighborhood where I somtimes get stared at or cussed at by gangbangers. The only good thing I see out of leaving the Army behind is that now I am finally learning the truth about myself.

Regarding anxiety, because of my sensory processing disorder, I don't respond correctly to psychtropic drugs, so anti-anxiety meds don't work on me, and don't know what would help.

This article and the others' comments helps because now I know I am not alone as a higher function autistic adult person who had a very late diagnosis and is not some career and life successful Einstein or Bill Gates. Eveything for me has always been a struggle, and I have had huge amounts of failure and few accomplishments and independence and security are extremely difficult to acquire, even though I desire and seek them.

Name: Catie
5 September 2013 - 11:48PM

I have looked at every site with ASD support. I was diagnosed at 18 with High functioning Autism. I slipped threw the cracks I'm not sure how but everything ive looked at for support help, treatment and a possible outlook for adults on the ASD. I would really like to know about treatment so I can try to improve my social skills on my own also. I would also love to know how often Autistic adults get married. Because people say that wont happen. I know that some do especially the higher functioning ones. I also am curious about knowing when autistic women get pregnant if theres a higher risk of disease then people without ASD or other problems.

Name: that girl next door
15 November 2013 - 7:35AM

@catie I have 3 kids and I have hfa. My son is pddnos. My girls have picked up on some of our strange ways but otherwise not effected.

Name: Pedro
22 September 2013 - 9:54PM

I wonder do aspies or high level Autisitcs get along any better with each other than non-Autistic? I am thinking not - but would love some advice. Is there a meeting or date site for us to share?

Name: Pedro
25 September 2013 - 1:35AM

I was just diagnosed - sort of, they are asking me if I want to take on the mantle. Should I hold off? I am learning much more.

Name: Chris
29 September 2013 - 1:48PM

I tend to agree with the findings of this and other studies that suggest the prospects for most high functioning autistics in our current societal structure are not so great as might commonly be assumed.
No amount of early intervention can change hard wiring and those without intellectual disabilities are unlikely to benefit much from attempts to improve their intellectual functioning.
Teaching social and communications skills at a young age is fine, but it does not guarantee that autistic individuals of any intellectual level will use them uniformly, correctly or convincingly. Once again, hard wiring and natural instincts are hard to overcome and the true nature of the autistic individual will break through any social facade sooner or later.
We also apparently need to be concerned that HFA children are not expected to become counterfeit neurotypicals by emulating NT behaviour too much and for too long at the expense of much mental and emotional energy and their own self-vision. This will almost inevitably cause a crisis later in life when their energy levels and interest in social acceptability (due to social failure) decline, potentially with disastrous personal and/or professional consequences which may be irremediable (e.g. midlife autistic burnout).
In short, we need to find a happy medium where HFA individuals can be more engaged in society while staying sufficiently true to their natures such that breakdowns and burnouts are avoided or minimized. The expectation of autistic individuals having a "normal life" must be abandoned. This, I'm afraid, will require significant societal change more than changes by individual autistics.

Name: Sarah T
20 December 2013 - 6:47PM

Spot on analysis! The 'mid life' burn out is exactly what has happened to me.

Name: Anonymous
6 October 2013 - 4:01AM

These facts sadden me. Having a younger brother with mild autism who, by theses statistics, will never have a family of his own. Who has dreamed of becoming a father his whole life. It utterly breaks my heart. Most people in this world are selfish. His heart of gold stands out. It just saddens me that his dream of a family, a wife, kids, a job will probably never happen when he deserves it the most.

Name: anonymous
16 October 2013 - 6:26PM

Do not be sad he has you and you can do alot to help him out he has mild autism and he has great chance to find love and have a family of his own so don't despair.I do believe most with disabilities have a heart of Gold to and that is why they have to do more to succeedbut it can be done they just need someone to help them find what they love to do and they can do it they are smart.Attitude is everything and just having faith in them and helping them to do things opens up their world and path to better life experiences just think he could meet a girl with mild autism to and they could have a great life together.

Name: anonymous
14 October 2013 - 1:07AM

We have a 14 year old son who was recently diagnosed with ASD. He has seen a paediatrician since he was 9 years old and several other "specialists", tutors etc., but was always considered as having dyslexia, ADD, sensory processing disorder etc. We now have the situation where he won't go to school as it is too scary and spends all day at home. The only thing he seems to want to do is play computer games which while he is not going to school, we can't allow as we feel he will never be motivated to go to school if he can sit at home playing on the computer all day. We really are at a loss at what to do...we love him dearly but this is putting a huge strain on our family and we really fear for his future.

Name: anonymous
16 October 2013 - 6:34PM

He's 14 right now what better time than this to partner up with the school to get him motivated it could be anything like the teachers helping you and him by giving him a reason to come to school helping them out with a special project in class.Right now is also a good time to put him in a sport he will make friends and his team mates will treat him like a brother I know because I know someone autistic that is in a sport and is treated great by all the team so now the school is as accepting of him.He may be on the computer all the time because it's his way of shutting out everyone and everything get him a hobby just do it because you don't want to wait till he gets to 18 and is alone and didn't do a thing.Don't feel at a loss this happened to me before I took action and now things are as I dreamt them to be all because not giving up and giving in.Talk to him there are tons of teachers who care there are tons of hobbies in sports and school that will make him friends or even a girlfriend tons of people that will accept him and change his life for the better.

Name: Autistic Advocate
15 November 2013 - 1:35AM

"Put him in a sport" you say? Maybe, but only if the kid shows some significant interest and/or ability in that sport. If that interest disappears, take him out as soon as possible. There is nothing to be gained by prolonging the inevitable. As you may or may not know, poor hand-eye coordination is a common problem with those diagnosed with High Functioning Autism/Aspergers. This, along with other autism-related differences (e.g. mind-blindness) may very likely place them among the poorer (natural) players in many team sports which of course may set them up for further ridicule from their "peers" or even adults who don't know or care that they have those problems. Being a "team player" is not generally an HFA/Aspie strength, though they can be successful if their enthusiasm for the team activity is sufficiently high. As such, parents should be very careful about the sport that is selected and make the kid aware of (and prepare them for) the attitudes and expectations they are likely to encounter from others involved with the team, which of course is to some significant extent focused on winning and individual and team abilities.

Name: Lynn K
25 October 2013 - 4:58PM

I have a 12 year old boy that was diagnosed with mild Aspbergers and ADHD (inattentive type) the beginning of this year (March). We did not get the diagnosis until he began refusing to get up to go to school. He developed severe anxiety and depression about going to school as his grades fell due to disorganization and having multiple classes in middle school. If I let him he would play on the computer all day long. My husband would literally pick him up (115 lbs.) and put him in the car. He would usually not get out and the Vice Principal would come out and explain the law of being in school.We worked with the school counselor and she was able to provide him with an in home tutor that came to the house. We found a therapist right after about 3 weeks of school refusal. She worked with him for over 2 months to work on just trying to go to the school building and then going to one class. Nothing seemed to work. It was only after she advised we have him admitted to children's hospital psych unit and have them work with him about coping with his anxiety. He stayed for 10 days and was discharged right to school that morning. With perseverance, he managed to continue going to all his classes everyday. We also had some bumps in the road as he had some Type 1 Diabetes issues that would prevent him from attending school. He managed to finish the school year and complete all his classes except one which he was able to do with a school packet over the summer. He was in advanced math but since he missed 3 months of school he needed to repeat that class as well. Now we're dealing with him being bored in that class as he's very good at math. Now 2 months into 7th grade he has been successful. We got him caught up in his band class over the summer and now he enjoys and plays trumpet well. He still is not initiate social situations but seems to relate to others when approached. I would really recommend that you not allow him to play computer while he should be in school. Use computer time as a reward if he completes assignments for his classes or attends one of his classes. Work with your school counselor to get any resources you can otherwise he will think it is normal to stay home from school. I spent so much time on the computer looking for any help I could find.I had to take a medical leave of absence from work to work with our son. Our family went through so much stress. Don't give up. I know it's hard. Most Drs. I've talked to has said competitive sports are not always the best choice but Martial Arts are great. Individual sports might be OK if they are athletically inclined like track or swim team. Some kids don't thrive at group sports though. Now we are dealing with his 14 year old brother who was diagnosed this week with PDD and am working with the school to get a 504 in place. Hang in there. I know what you're going through.

Name: ME
16 October 2013 - 6:07PM

What a bummer this article for those that it made feel down here's something to think make you feel alot bettr for the future.
Albert Einstein-Autism.
Bill Gates-Aspergers
Dr Temple Gradin-Autistism
Ben Franklin-Mild Autism
Steve McQueen-Learning Disability
Leonardo DiVinci-Aspergers
John Lennon-Learning Disabilty
Daryl Hannah-Autism
George Washington-Severe Learning Disorder
Suzanne Sommers-Learning disablity
George Patton-learning disorder
Louis Pasteur-learning disability
There may be more but guess what they beat the odds and Albert Einstein's parents never thought their son would do anything and look at him now not only is he still remembered today but his genius would not have been possible without his disability so remember that your children are not only special but that they to can do greater things just believe in them and they can do anything.

Name: Over-50 Aspie Genius
21 November 2013 - 4:41PM

"[B]ut [Einsein's] genius would not have been possible without his disability."

What a horrible (and untrue) thing to say! Einstein was a genius >in spite of< his autism. Autism has no causal relationship with IQ. To imply otherwise is a disservice to parents of autistic children with low IQ.

That does not mean that their children will not succeed at something. But to say that they "can do anything" is offering false hope to millions. That's the kind of emotional nonsense that NTs toss around, which annoys the hell out of aspies. I have succeeded at some things--despite my disability--but I still struggle every day.

For parents, yes your child could "beat the odds" and become successful. But it will be a lifelong struggle. So don't abandon hope, but do realize that the odds are heavily stacked against you. That is the point of this article.

Name: aspie lost in the fog
26 November 2013 - 11:26PM

Yes and in today's world they probably wouldn't have gotten anywhere. We now live in a world that is being dominated by extreme socialization requirements to even get employed.

Name: Eric
10 December 2013 - 4:07AM

People with pdd-nos can't get jobs, can't get married. I wouldn't say that's always true. It would depend on the severe.

Name: Mom of PDD-NOS
11 December 2013 - 2:09AM

The author quotes a person named Rogers, who says early intellectual and social intervention could help PDD-NOS's to be a little more succesful in life. I wonder what exactly intelectual and social intervention means. My son spend more than 10 years in therapy, and that consisted of a partnership between a psychiatry who prescribed a cocktail of 3 strong drugs, and a psychologist who was mostly scolding my child all the time. I never understood the significance of this therapy, and I am an educator with a master degree. It just felt they were just improvising. I don't think medicine knows how to handle PDD-NOS. I have had better results with nutrition and alternative medicine, but still I fear my son will never be financially independent. He argues all the time, because he doesn't understand communication. He takes everything personal and literal. I never saw the doctors addressing this issue or correcting it. I just saw them shouting at my son and asking him to be quit and respectful. If that is what the author is trying to say about corrective behavioral and social intervention, well, id didn't work.

Name: Frank Lee
17 December 2013 - 1:22PM

It sounds like this article was written under the assumption that mild autism equates to no more than social impairment, and not the significant cognitive deficits that are at the root of the disorder and make life (social and nonsocial) difficult for people on the spectrum, even if they possess normal or above average scores on an IQ test.

Name: Sarah T
20 December 2013 - 6:40PM

There are significant problems with studies that compare 'intellectually impaired' and 'high functioning' groups. To be considered 'intellectually impaired' a person must usually have an IQ below 70, and conversely, those with an IQ above 70 are considered 'high functioning'. A IQ below 70 is equivalent to being 2 standard deviations away from the mean on the normal distribution curve, on the low end of the scale. This puts the person in the bottom 2.5% of the population. An IQ of 70 or above, puts the person into the 'high functioning group': a group that consists of 97.5% of the population! (By way of an illustration, the producers decided to give 'Forest Gump' an IQ of 80 in their film). Of course, all researchers are aware of this definition, but not necessarily the interested lay reader! Very high functioning individuals may well have been able to use their intellectual abilities to 'mask' their autistic problems and so have never received a formal diagnosis. Such individuals will have been excluded from these studies (as research is now showing has also happened to many high functioning females). This said, it is clear from just this small selection of comments that even those at the very able end of the spectrum often underachieve in many basic aspects of their vocational and social life. I think to get the attention of governments, studies should be done that make better comparisons, comparing autistic individuals with non autistic individuals with similar levels of IQ (or other measures of functioning). How much exceptional talent is being wasted and not supported would become much more evident. Exposing both the extent and the detail of the tragedy may attract better funding, interventions and support for individuals across the whole spectrum of ability.

Name: Carolina
23 December 2013 - 12:27PM

My advice: have your teen Aspie learn some kind of trade that he or she could actually find a job doing as an adult, whether iit's repairing violins or growing flowers, something that does not need a lot of social skills. Poverty is the greatest risk for adults with Aspergers. Also, if your child has even one good friend it can make a huge difference to prevent loneliness. I am speaking from hindsight. Daughter, 32, is brilliant and strange. She has ivy degree and breezed through law school.. We thought she was just gifted and odd. However she has had a terrible time in the real world getting and keeping a job. She is terrible with money. Real life seems to complex for her. We all felt relieved when finally she was diagnosed an Aspie last year. But it still does not make her employable. In fact now that is what she is using as a reason for not working. My savings account is drained from supporting her.

Name: mplo
13 January 2014 - 1:34PM

Autism is still a very poorly-understood, innate, biologically-based neurological disorder, which, imho, has a great deal to do with why so many people on the autism spectrum have such a difficult time functioning in the regular world.

Name: JV
20 January 2014 - 4:25AM

I am from Australia and my son is 10 and been diagnosed with PDD-NOS when he was 4. It felt like our life was turned upside down especially not knowing much about it. We always felt he had been wrongly diagnosed as he was acting like any typical boy would being lazy and playing video games. He does go through stages of not wanting to go to school as well. After reading through peoples stories we now don't feel alone. Our school system is quite good and work very closely with us. He enters High School next year and the school has already planned ahead for him which I hope gets the best out of him. Its sad to think that he might not have a family of his own after reading this story but always try to be positive and you never know what will happen.

Name: Ella C
23 January 2014 - 3:49PM

I just want to get some idea about autism. I really dont know if an adult will experience this or shall I say my ex-boyfriend he is now 34 and never been in a long term relationship. He is very handyman and very good in computers but he doesn't have friends. He is always playing online games and he really loves it. When he wakes up he'll get some tea and then sit in the computer till he will go to work. When he arrives home he goes directly to the computer. I dont know if this is habbit or sickness. His house is not yet done like the guest room has full of stuff and it has been there almost 4 years. He is kind of introvert also. We did broke up because I dont understand his attitude. He is really kind but when he is mad he was like a monster. He doesnt want to talk and he likes to drag and throw things. I really dont know what to say to him.

Name: mplo
26 January 2014 - 1:40PM

This article is a bunch of crap. Contrary to what it says, people on the autism spectrum can and do end up leading normal, productive lives like most everybody else, if early (and correct) intervention occurs.

Name: a mum
9 February 2014 - 10:55PM

I have 31yr old daughter i believe she is aspie, she also has dyscalculia
and is lactose intolerant, having been refered by Dr. has to go for cognitive behavioural therapy and whatever beyond, before autism assessment if they accept for funding..she suffers anxiety, panic attacks, agraphobia and is depressed because lack of progress, has never had job, has no friends i dont understand why she cannot have an assessment for autism first instead of wasting time on CBT which she already had a few years ago, i always knew there was something about her but couldnt figure out what as aspie wasnt known
to me in the 80s now i worry so much what will happen to her when im not around.

Name: An aspie
24 February 2014 - 3:58PM

I am 22, and out of ALL the people I know, only 1 is married at 22. I don't know where they got the idea that long term relationships are normal things for folks in their early twenties, but nowadays it is rare. :P

Name: 40 year old man w/ PDD-NOS
6 March 2014 - 9:59AM

I'm so very grateful I found this article, & most of these comments.

I was diagnosed PDD-NOS at age 39 after completing 2 extensive, formal personality evaluations over a weekend at a university mental health care facility(NOT a nuthouse) in July 2012 after having an emotional breakdown with my local police dispatch over my obnoxious, inconsiderate NT neighbors & expressing suicidal feelings to the police dispatch, which required them to send me to the facility via ambulance(a bit embarrassing, but I went there voluntarily because I figured they would help me). Soon after that, with the diagnosis & being declared permanently disabled, I managed to acquire monthly disability payments that began in November 2012, and which will probably go on for the remainder of my life & at least ensure that I'll never be homeless, which is a silver lining for those who, like me, didn't get the help they needed much much earlier on & ended up permanently unemployed with no social life after I had to drop out of college due to societal ostracism due to my rather severe PDD-NOS(or ASD) condition, even though I had done reasonably above-average(B student) all throughout most of my education since about the 5th grade(though I was in special ED in early elementary(they categorized me as "slow")). I had the usual markers: lack of eye contact(very shy), poor coordination in sports(ensuring I'd be picked last in gym always), being verbally bullied from most of the class daily, being thought of as "weird" or "retarded"(even though grades were good, but my shyness & lack of speaking & "weirdness" got mistaken for stupidity).

Anyway, I'll concur with those mentioning that most of "our" problems are really not our fault, but rather the fault of the mostly neurotypical(or normal) sick society & their unwillingness to help us(or at least try to) in any way(especially those of us on the "higher" end). For instance, social workers at the facility, though mentioning I might qualify for disability, encouraged me to first go to an employment office in my relatively-rural(read: low employment) area & look for work instead(this was at the facility before they determined my diagnosis, which had they known ahead of time, they might know that something like 90+% of those on the autism spectrum are either severely under-employed or unemployed, which this article/most of these comments seem to reveal also). I never had fit into ANY work environments & was always singled out, sometimes ostracized & then let go shortly after(I could only find work in low-pay, unskilled temporary jobs, even with "some college"(which doesn't mean a thing today without a degree)). I haven't had a single job since 1994; though I wish to operate a home online business someday hopefully not too far down the road(I'm 40 years old) so I can be at least financially self-sufficient(though I already am, sort of, thanks to the disability payments I'm saving up so I can, at least, be somewhat "independent" when I'll need to be).

In short, I'm very fortunate I got myself admitted to this care facility nearly 2 years ago so that I could acquire disability payments, which I'm saving for(hopefully) years from now when both my parents are dead & I have to move out of the house(which isn't in my name, since I lived there since I was 10(obviously my parents bought it)), and so, like I said, at least money doesn't look like too big of an issue(assuming of course the whole US economy doesn't collapse with all this massive government debt which might, theoretically, jeopardize future autism disability payments for me, which won't matter if, like I said, I can somehow get a business going & get off the disability, though I'm not sure if I can negotiate the necessary "customer relations" involved in any business with this dreaded social deficit of mine).

That aside, I'm so glad most of the commenters here "get it" about us, and it's just too unfortunate that what we understand may as well be Chinese to the vast "normal" majority(hence the need for government services for people like me), but since they are the majority, don't count on "them" ever acknowledging that maybe they aren't so perfect themselves & that maybe, just maybe, they should do more to follow that "golden rule" that says "do unto others what you'd like done to you" & apply that to everyone, even those they think are "weird", "nerds", "retards", "creepy" or whatever.

Sorry for the length. I'm so glad I found this article & these comments. I may copy this page & put it in "word wrap"/save it in Windows Notepad so that I can forever meditate in the pure wisdom, compassion & understanding of most of you great individuals, autists & non-autists(parents of autists) alike. Together we can change our lives(society) towards our favor.

Name: Aspie75
8 March 2014 - 11:07PM

Normal is the important word here. I live a normal life in my own terms. Your kid will be fine. Let them be hungry and they will figure out how to feed themselves. How do I know? Aspie here. Struggled mightily to live a "normal life" and eventually was able to. It is not easy as the world is biased against us and want us to fit a mold we can certainly not fit in.

Name: Lynn
10 March 2014 - 10:38PM

Some people who have autism prefer to be single not because autism creates them to be single. It's not fair that this article does not point that out.

Name: Lynn
10 March 2014 - 10:40PM

I mean that these people prefer to be single anyway. There's a lot of benefits and happiness that some people find in being single.

Name: Single, Autistic, and Fine With It
2 April 2014 - 5:35PM

They should divide up those autistic people by whether they want a romantic relationship or not before taking statistics. The overall percentage of autistic people who aren't in romantic relationships means nothing. What matters is how many WHO WANT THEM don't have them. What if, like, 50% don't want them?

That'll make the prognosis for people who do look much bleaker than it really is. It also might prevent the ones who don't from realizing it and thus cause them to waste time and tears on why they "can't connect" when the deeply buried truth is that they neither need nor want that kind of connection. That's unfair and wrong.

Name: AspieCatholic Girl
11 April 2014 - 5:12AM

Guys, guys, guys, this article didn't say autistic adults CAN'T get jobs or get married or have good friendships, it just said that comparatively few of them do.
Statistics about a group don't definitively determine the future of each member of that group.
It is true that such things are a struggle for autistic adults. But that doesn't mean that jobs, marriage, and friendships are completely unattainable.
Statistics about a group don't definitively determine the future of each member of that group.

Name: justin, pdd
19 April 2014 - 9:51PM

My life has been full of failures, im alone, jobless, and i hardly get to see my 5 year old daughter. I tried taking zoloft, it doesnt work. I cant seem to be motivated, im constantly paranoid, im afraid to leave my house. My parents resent me, my brother hates me, and did i mention i have no love life? Any suggestions? Please feel free to be sarcastic, i welcome the challenge

Name: i got it but i dont know what to do
3 May 2014 - 1:49PM

im 22 with pdd-nos i find your article very informative. to be honest i find it very hard to keep a job. it usually takes a while for my manager to notice that,while they know something is different they dont know exactly what. i usually get descriminated against. i feel hopeless at ever having a stable job or a career. any advice?

Name: michele brigando
16 May 2014 - 8:56PM

i have had something since i am a child it has siolated me and i am alone at 62.i have had alot of problems with socialization because i was isolated as achild in psych wards and then just isolated, i didn't feel comfortable in school etc.i am homeless when i go for help i am treated as if i am lying because i am so articulate.can you people help me to help myself

Name: An angry nonconformist
8 June 2014 - 9:13PM

Not taken into account how many of these people can not have a family and how many people do not want. (The same goes for job - some people just like to live someone else's expense.). The style of the article is deeply discriminatory both in relation to autists, and in relation to singletons. Photo at the beginning of the article is really mocking (not by itself, but in the context of this article), and the subtitle "Single and disabled" sounds like singleness is a bad thing in itself. If I lived in the same country as the author of the article, I would sue her in court.

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