Asperger’s (high functioning autism) is a lifelong developmental disorder, but ironically, most research studies on the disorder have been cross-sectional (i.e., they only provide a snapshot of what it looks like at a single point in time). Why?
Because following people with Asperger’s and HFA over long periods of time is expensive and requires a lot effort on the part of families and researchers, which is unfortunate since long-term studies are the only way to understand what early-life factors help some kids with the disorder do better than others over the long haul (something that can’t be assessed in cross-sectional studies).
Thanks to new statistical techniques, researchers can now group their study participants based on shared characteristics that unfold over time. A handful of long-term studies, each including up to several hundred participants, have now followed individuals on the autism spectrum for nearly 20 years. As the young people in these studies come of age, researchers are piecing together how the disorder progresses through the life span. Let’s look at a few of these studies (in no particular order):
Because following people with Asperger’s and HFA over long periods of time is expensive and requires a lot effort on the part of families and researchers, which is unfortunate since long-term studies are the only way to understand what early-life factors help some kids with the disorder do better than others over the long haul (something that can’t be assessed in cross-sectional studies).
Thanks to new statistical techniques, researchers can now group their study participants based on shared characteristics that unfold over time. A handful of long-term studies, each including up to several hundred participants, have now followed individuals on the autism spectrum for nearly 20 years. As the young people in these studies come of age, researchers are piecing together how the disorder progresses through the life span. Let’s look at a few of these studies (in no particular order):
- Study #1: The researcher assessed cognitive skills in 37 kids on the autism spectrum and average IQ. She found that kids between 4 and 7 years of age who have the strongest “executive function skills” (i.e., skills required for planning and carrying out complex tasks) also have the strongest “theory of mind” (i.e., the ability to understand others’ thoughts and beliefs) 3 years later. The study suggests that improving executive function skills in kids with Asperger’s (HFA) may also yield benefits for “theory of mind.”
- Study #2 showed that kids whose moms and dads are more engaged in their treatment early on have better verbal and daily living skills as teenagers. Unpublished data showed that the kids with the best outcomes (e.g., able to attend college with no extra support) all had moms and dads who had been involved in their treatment beginning at age 2 (this should not be interpreted as assigning blame to parents if their kids do poorly though).
- Study #3 revealed that adolescence is a time of behavioral and symptomatic improvement for some Asperger’s and HFA teens; however, this improvement slows down around the time the teens leave high school. This may be in part because (a) the structure and routine of school is beneficial for these teenagers, and (b) these young people frequently lose access to services around the time they finish school.
- Study #4 followed about 300 participants from age 2 to 21, and found that about 10% improved dramatically by their mid-teens. It should be noted that these young people tended to (a) start out with a high verbal intelligence quotient and (b) improve their verbal skills early on. This is supportive of other studies suggesting that language skills and IQ are the strongest predictors of a youngster’s outcome.
- Study #5 was a longitudinal study that tracked 39 kids on the spectrum from about age 4 to age 19. Analysis of the data suggests that building “theory of mind” skills may help kids who start out with poor language skills overcome their deficits. These findings are typical of the way researchers are using longitudinal studies to analyze how changes in one area of development influence another.
- Study #6: According to yet another study, most teenagers and grown-ups with Asperger’s have less severe symptoms and behaviors as they get older.
It has long been the hope of moms and dads with Asperger’s and HFA kids that the right care and support can reduce - or even reverse - some of the developmental problems associated with the disorder. But, while studies find that behavioral intervention programs are linked with improved social skills, the question of whether kids can technically “outgrow” the disorder remains difficult to answer. Studies to date that have hinted at this possibility are fraught with questions about whether the kids who apparently shed their autistic traits were properly diagnosed in the first place.
Who better to poll than the people who grew up on the autism spectrum? So, we asked a few young adults with Asperger’s to address the following question: “Was there a reduction in Asperger’s-related symptoms as you got older, or did things tend to get worse?” Here are their responses:
“Although the condition remains a constant certainly, the expression can change over time. At times, I might seem quite neurotypical (albeit shy) and at other times....well, the opposite. From my own personal observation, I have days when I really seem to "read" others better and other days are not. Certainly I've had really rough periods, but inside I am still the same.”
“Asperger's is actually supposed to get easier to manage as the person gets older. This isn't to say, however, that big set-backs can't happen. The truth is that they WILL happen. I have improved overall since my teenage years, but this 'improvement' has brought with it two suicide attempts and many really low moments too.”
“For me, when under stress I'm just not able to put in the effort to initiate my coping mechanisms. Some of them are automatic (e.g., blocking out too much sensory input) and fail when I'm under stress. The net effect is my autistic nature affects me worse - it's not that I'm any more autistic, it's that my coping strategies aren't working.”
“From my experience I have gotten more aspergery every year since 16 years old, however I got less every year from 11-16, which was high school. So the high school environment must have made me much more NT, almost certainly because I was in a group of NT guys the whole time. Now as I get older the differences become increasingly apparent and it's increasingly harder to relate to people and to tolerate society. A lot of things changed around, for example when I was young I used to collect rocks and I was much more verbose for my age, now I find it harder to relate to people though and I have more social anxiety. I'm sure AS traits will continue to switch around as I grow. I think a part of it is the people you have in your life and the way you see yourself.”
==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance
==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance
“I don't necessarily think your Aspergers gets worse as you get older, or better for that matter. The things you're doing and the skills you've learned can either help you manage your condition, or make things go out of control. Stress fluctuates, and stress/anxiety makes our coping mechanisms less effective. So, sometimes, it looks like we're getting worse as we get older because there are life changes that are very stressful... spouse, kids, home, job, etc. The longer you work, the more "upper level" you are generally expected to become, so you get promoted into a job that has more social interaction.”
“I don't think it is a matter of AS getting worse (at least in my case), so much as comorbidities and just plain life making it harder to compensate for. It's tough to do anything when you also have to deal with depression or anxiety. I know that during the very stressful times in my life, it was extremely hard to deal with the negative effects of AS on top of it all. Changing jobs, graduating, recuperating after a bad relationship, etc. I found that my ability to compensate and adapt could at times drastically decrease.”
“I think I have improved some things over the years what are related to my disability, for example I am better at handling my special interests at a ''safer'' level. By that I mean when I was aged 13-15, I got obsessed with some local people who lived next door to my cousin. I started this obsession, and got to a point where I tried getting really involved in their lives (in other words, stalking), and it got too ''freaky'' for them (plus they had a baby), so they went to the police station and reported me. The obsession got so out of hand, and I went on about this couple to people at school - who got so fed up with me that I did lose a lot of friends because of it. Now I am obsessed with some people who I didn't know before (these are bus-drivers), but they don't know it. So I have learnt to keep my obsessions under control more - which is one improvement. I'm proud of myself there.”
“I would have to say it is up to the individual. Though technically Aspie symptoms are supposed to get better with age, your will to constantly struggle with it can weaken. Some Aspies choose to give up and seclude themselves and with no social interaction to keep your symptoms in check. And some Aspies are perfectly content like this… it's all about what makes you happy.”
“In some ways it seems like I’m getting more autistic as I get older, and in other ways less. My autistic traits have mostly just moved around, and in some cases just show up differently. As a kid I didn't stim much, at least not noticeably. Now I stim A LOT. But I’m more tolerant of certain sensory things... My social abilities have improved a little as I’ve gotten older and learned things, and I’ve gotten more outgoing around people. So, I talk more sometimes, but that means that I'm more likely to make mistakes in socializing and that my special interests are more obvious to other people. When you're an adult there's more stuff expected of you than when you're little, so my problems with life skills are more apparent now.”
“It doesn't get worse, but it may seem like it does because there is the anxiety and the depression. Depression makes your AS symptoms worse. It's just an illusion.”
“I've found myself becoming more isolated as time goes on. I think in school you have friends (often with similar traits) but once you leave, your true nature slowly takes control. If you are stressed or don't like being around people much, then you will inevitably find solitude. I'm not sure if things have gotten worse regarding my aspie traits or if I'm just more aware of what they are.”
“I've had some 'worsening,' but it's not been like a path back to where I was when I was younger. It's just different. Even though I have cognitive losses, I still have what I learned when pushing myself hard to interact with people. As a teen, I found interacting even with store clerks to be terrifying, but I eventually learned how to deal with it, and it remains not-a-very-big-deal, today. And, I can still even manage short bursts of small talk (though it is still exhausting).”
“Periods of high stress definitely regress my symptoms, my obsessions become more intense and impulsive behaviour harder to control. You lose those management skills developed over many years. I would say yes, your AS can appear to deteriorate (get worst) during periods of high stress throughout life.’
“Stress is my culprit. All of the coping strategies I've learned over the years shut down systematically as stress increases. Verbal communication is the first to go... I do not desire it, I shy away from it to the point I finally don't bother to speak at all. Meltdowns start to increase. Auditory problems seem to get more sensitive. One by one, it seems to be getting worse. But, if I can eliminate the stress, my ability to cope increases. I don't think there is any literal change in my challenges, only my ability to deal with them.”
In working with clients on the autism spectrum over the years, it has been my experience that many of these individuals do not get worse over time. In fact, it often gets somewhat better with time as they learn some coping skills that they lacked earlier in life. Most people with Asperger’s and HFA tend to gain these skills by default as they age (the concept of “the longer you live, the more you learn”).
Having said this, there does seem to be a period of time (lasting about 5 – 10 years) post high school where there is an increase in symptoms (e.g., anxiety, depression, isolation, etc.). As suggested in the information above, this may be due to (a) the loss of structure provided by regularly attending school, and/or (b) the absence of frequent association with “typical” peers. But, by the time these young adults reach their mid-to-late 20s, many find that the accumulation of life experiences has helped lessen some their (unwanted) Asperger’s-related symptoms.
However, the exception to this (again, based on my practice) seems to be those who are unemployed, not attending college or some other form of continuing education, and still living with their parents. This suggests that being insulated from the community (i.e., isolation) exacerbates the symptoms - and possibly stunts emotional growth due to the lack of ongoing, multifaceted life experiences.
References:
In working with clients on the autism spectrum over the years, it has been my experience that many of these individuals do not get worse over time. In fact, it often gets somewhat better with time as they learn some coping skills that they lacked earlier in life. Most people with Asperger’s and HFA tend to gain these skills by default as they age (the concept of “the longer you live, the more you learn”).
Having said this, there does seem to be a period of time (lasting about 5 – 10 years) post high school where there is an increase in symptoms (e.g., anxiety, depression, isolation, etc.). As suggested in the information above, this may be due to (a) the loss of structure provided by regularly attending school, and/or (b) the absence of frequent association with “typical” peers. But, by the time these young adults reach their mid-to-late 20s, many find that the accumulation of life experiences has helped lessen some their (unwanted) Asperger’s-related symptoms.
However, the exception to this (again, based on my practice) seems to be those who are unemployed, not attending college or some other form of continuing education, and still living with their parents. This suggests that being insulated from the community (i.e., isolation) exacerbates the symptoms - and possibly stunts emotional growth due to the lack of ongoing, multifaceted life experiences.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
References:
• Anderson D.K. et al. Am. J. Intellect. Dev. Disabil. 116, 381-397 (2011)
• Bennett T.A. et al. J. Can. Acad. Child Adolesc. Psychiatry 22, 13-19 (2013)
• Georgiades S. et al. J. Child Psychol. Psychiatry 54, 206-215 (2013)
• Gotham K. et al. Pediatrics 130, e1278-e1284 (2012)
• Green S.A. et al. J. Autism Dev. Disord. 42, 1112-1119 (2012)
• Pellicano E. Autism Res. Epub ahead of print (2013)
• Smith L.E. et al. J. Amer. Acad. Child Adolesc. Psychiatry 51, 622-631 (2012)
