People with milder forms of autism struggle as adults
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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
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.
Thanks very much for that insight, Rose, and thank you for reading SFARI.org!
Funny how stigma/bigotry are not mentioned at all in this article. They're certainly quite relevant...
All these comes under the mental health problem.Thanks for the article.
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.
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.
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!
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.
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.
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!!!
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.
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.
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.
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.
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?!
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.
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.
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"!!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
My PhD is in supporting adults with HFA at universities and colleges.
Hanan Almasoud- Lecturer and researcher at King Saud University
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.