People with milder forms of autism struggle as adults - article
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Anonymous
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Study I haven't seen mentioned yet: http://www.socialmotionskills.org/blog2/2011/09/18/people-with-milder-forms-of-autism-struggle-as-adults/ People with milder forms of autism struggle as adults Article published by SFARI (Simons Foundation Autism Research Initiative; written by Deborah Rudacille 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. |
Anonymous
| This is extremely interesting. As the mother of a child with what family members tend to call "mild autism", I am hopeful that the early and intestive intervention we've done will make a difference in DS' life trajectory. But I do think that this study has a valid point that we have to take to heart, which is that isn't really autism lite. |
Anonymous
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You know, we've had very successful autistic people in my family. My HFA uncle works on a factory line and is near retirement and makes more money than I do as a junior associate as a law firm. He is married and has a daughter and two grandkids. It's not that he couldn't succeed. He just needed more support. He bought a house from my grandmother and lived next to her his entire life. He is a vet who served as an enlisted man in Korea.
His uncle (my great uncle) was a successful mechanic and had HFA. He also had close support from family. Uncle P. also married and had kids. At the same time, I have a friend with ASD who successfully graduated college, but couldn't manage to keep a job in IT. He is currently drawing SSDI. I'm hoping for the best, but I've made sure that my DS has a clear diagnostic trail so that if he needs to go on SSDI when he is an adult he can. I'm hedging my bets. |
Anonymous
One of the interesting things from the article is they actually went through and double-checked if these adults would still qualify as PDD-NOS. They were originally Dxed at a different time, before such broad labeling occurred, and before early therapies. The variables are very different today. |
Anonymous
| I have two cousins with austism (one low functioning and her sister with HFA). THe cousin who is low functioning is happy but lives in a group home and has never worked. Her sister is very bright, and has a college degree. But she's way underemployed and doesn't date guys at all. I think her life has been harder. I wonder what early intervention could have done for her. |
Anonymous
| This is why our government needs to spend money on finding the cause and a means of preventing/curing autism, and not trying to send people to Mars. Can you imagine one of every 120 adults having autism in the near future? We can pay now or pay even more later. |
Anonymous
These family members were never dx'd as children. It only came up when my oldest was dx'd. There was a bit of trouble getting my head around it when people starting using the ASD label with my son. "No, he doesn't have an ASD. He's just like Uncle R. Some kids in my family are like that. There's nothing WRONG with them." Well. As it turns out, there isn't anything wrong with Uncle R. other than a mild ASD (and comorbid epilepsy). With family support. Uncle R. did well. I have the same hope for my son. Uncle R. got zero interventions (and had a father who beat him with a belt for things like repetitive behaviors and echolalia) and did okay. I hope that since my son has had a lot of speech therapy and social skills training, he will do okay. I don't think my hope is misplaced. He is currently mainstreamed in third grade and does not have an aide. He is getting all A's. He's a complete whiz at math. I've had math professors weirder than my son is now. I don't want a cure for my son. I don't think many HFA people need a cure. Uncle R. was my favorite family member as a kid. He collected comics and let me read them. He took me to movies. His house was a refuge when my parents were getting a divorce. I love him. He and my son don't need a cure. |
Anonymous
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Anonymous
We struggled with this with my son. We repeatedly said "It's not autism, because it's not severe enough." He has undergone an ADOS and we did an ADI-R, however, which is the gold standard for diagnosis. Both were positive for autism. (His DX is autism, not asperger's or PDD-NOS.) Autism doesn't require a life crippling severity to be diagnosed. Neither the DSM-IV or the DSM-V require that the disorder be severe. (The DSM-III did, but it hasn't been the diagnostic standard since the mid 1990's.) Auti |
Anonymous
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Actually, the DSM IV does say it needs to be severe, but many people miss this:
From the DSM IV PDD NOS This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes "atypical autism" ? presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these. |
Anonymous
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Also..
Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR, 2000 Pervasive Developmental Disorders Pervasive Developmental Disorders are characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities. The qualitative impairments that define these conditions are distinctly deviant relative to the individual’s developmental level or mental age. Information is contained here on Autistic Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s Disorder, and Pervasive Development Disorder Not Otherwise Specified. These disorders are usually evident in the first years of life and are often associated with some degree of Mental Retardation, which, if present, should be coded on Axis II. The Pervasive Developmental Disorders are sometimes observed with a diverse group of other general medical conditions (e.g., chromosomal abnormalities, congenital infections, structural abnormalities of the central nervous system). If such conditions are present, they should be noted on Axis III. Although terms like “psychosis” and “childhood schizophrenia” were once used to refer to individuals with these conditions, there is considerable evidence to suggest that the Pervasive Developmental Disorders are distinct from Schizophrenia (however, an individual with Pervasive Developmental Disorder may occasionally later develop Schizophrenia). |
Anonymous
| Depressing. |
Anonymous
My son is diagnosed with high functioning autism, not PDD-NOS. He has all of the impairments, but they are mild. The relatives that I described were all the spitting image of my child when they were child. My grandmother was very puzzled by her quirky kid. Under the new DSM-V standards, my son will have a diagnosis of Autism Spectrum Disorder, Level 1. I agree that PDD-NOS requires some severity. When all of the deficits are showing up, the kid should only get a DX when there is a clear problem shown by a severe impairment. For Asperger's, the DSM-IV standard is the child must show "clinically significant impairment." For autism, the DSM-IV standard doesn't require either one. The assumption is that if a kid has all of the symptoms of autism, there is clinically significant impairment. DSM-V has different levels (1-3) to diagnose severity. Field testing on the DSM-V shows that many kids currently diagnosed with PDD-NOS do not get a diagnosis of ASD under the DSM-V. |
Anonymous
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Here's an other study that found good to fair outcomes for 56% of a sample of young adults with ASD:
Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739-747. ABSTRACT: To learn about the lives of young adults with ASD, families with children born 1974-1984, diagnosed as preschoolers and followed into adolescence were contacted by mail. Of 76 eligible, 48 (63%) participated in a telephone interview. Global outcome scores were assigned based on work, friendships and independence. At mean age 24, half had good to fair outcome and 46% poor. Comorbid conditions, obesity and medication use were common. Families noted unmet needs particularly in social areas. Multilinear regression indicated a combination of IQ and CARS score at age 11 predicted outcome. Earlier studies reported more adults with ASD who had poor to very poor outcomes, however current young people had more opportunities, and thus better results were expected. (PsycINFO Database Record (c) 2008 APA, all rights reserved) |
Anonymous
| Why would someone with ASD be likely to be obese, per the study cited above??? |