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):
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 Unpublished data showed that the kids with the best outcomes (e.g., able to attend college with no extra support) all had moms and dads who had been involved in their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.”
“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.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• 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)
Kids with Asperger’s (AS) and High-Functioning Autism (HFA) have the intelligence to participate in regular education, but they often do not have the emotional resources to cope with the demands of the classroom. These “special needs” kids are easily stressed due to their inflexibility. Self-esteem is low, and they are often very self-critical and unable to tolerate making mistakes.
Young people with AS and HFA, especially teenagers, may be prone to depression (as a side note, a high percentage of depression in grown-ups with AS and HFA has been documented). Rage and temper outbursts are common in response to stress and frustration.
Kids with AS and HFA rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be. Interacting with peers and school staff – and coping with the ordinary demands of everyday life take constant strenuous effort.
1. Teachers must be alert to changes in behavior that may indicate depression (e.g., greater levels of disorganization, inattentiveness, isolation, decreased stress threshold, chronic fatigue, crying, suicidal remarks, etc.). Do not accept the youngster's assessment in these cases that he is "OK."
2. Teach the AS or HFA student how to cope when stress overwhelms her in order to prevent outbursts. Help the youngster write a list of very concrete steps that can be followed when she becomes upset (e.g., breathe deeply three times; count the fingers on your right hand slowly three times; ask to see the special education teacher, etc.). Include a ritualized behavior that the youngster finds comforting on the list. Write these steps on a card that is placed in the pocket so that they are always readily available.
3. Report symptoms to the youngster's therapist or make a mental health referral so that the youngster can be evaluated for depression and receive treatment if this is needed. Because AS and HFA kids are often unable to assess their own emotions and can’t seek comfort from others, it is critical that depression be diagnosed quickly.
4. Kids with AS and HFA are so easily overwhelmed by environmental stressors and have such profound impairment in the ability to form interpersonal relationships that it is no wonder they give the impression of fragile vulnerability and immaturity. When these “special needs” youngsters are compared to their “typical” peers, it becomes very evident just how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform.
5. Prevent outbursts by offering a high level of consistency. Prepare these kids for changes in daily routine in order to lower stress. Kids on the autism spectrum frequently become fearful, angry, and upset in the face of forced or unexpected changes.
6. AS and HFA kids who are very fragile emotionally may need placement in a highly structured special education classroom that can offer an individualized academic program. These kids require a learning environment in which they see themselves as competent and productive. Accordingly, keeping them in the mainstream where they can’t grasp concepts or complete assignments serves only to lower their self-concept, increase their withdrawal, and set the stage for depression. In some situations, a personal aide can be assigned to the youngster rather than special education placement. The aide offers emotional support, structure and consistent feedback.
7. Kids with AS and HFA must receive academic assistance as soon as difficulties in a particular area are noted. These kids are quickly overwhelmed and react much more severely to failure than do other kids.
8. It is critical that teenagers with AS and HFA who are mainstreamed have an identified support staff member with whom they can check-in at least once daily. This person can assess how well the student is coping by meeting with him daily and gathering observations from other teachers.
9. Be aware that teenagers with AS and HFA are especially prone to depression. Social skills are highly valued in the teenage years, and the AS or HFA student realizes she is different and has difficulty forming normal relationships. Academic work often becomes more abstract, and the teen finds assignments more difficult and complex. In one case, teachers noted that an AS teen was no longer crying over math assignments, and therefore believed that she was coping much better. In reality, her subsequent decreased organization and productivity in math was believed to be a function of her escaping further into her inner world to avoid the math, and thus she was not coping well at all.
10. Affect as reflected in the teacher's voice should be kept to a minimum. Be calm, predictable, and matter-of-fact in interactions with the AS or HFA youngster while clearly indicating compassion and patience. The teacher who does not understand that it is necessary to teach AS and HFA kids seemingly obvious things will feel impatient and irritated. Do not expect the “special needs” youngster to acknowledge that he is sad or depressed. In the same way that they can’t perceive the emotions of others, these kids can also be unaware of their own emotions. They often cover up their depression and deny its symptoms.
Teachers can play a vital role in helping kids with AS and HFA learn to negotiate the world around them. Because these kids are frequently unable to express their fears and anxieties, it is up to caring adults to make it worthwhile for them to leave their safe inner fantasy lives for the uncertainties of the external world.
Staff who work with these youngsters in schools must provide the external structure, organization, and stability that they lack. Using creative teaching strategies is crucial, not only to facilitate academic success, but also to help these young people feel less alienated from other human beings and less overwhelmed by the ordinary demands of everyday life.
COMMENTS: • Anonymous said… you are not alone!"Just keep swimming..." • Anonymous said… Absolutely spot on in relation to my 10 year old son.. & worthwhile sharing with his school! • Anonymous said… Absolutely spot on. How I've described my son and why I moved him to a school which actively seeks to get the best from him every day, without the mainstream inadequacies. He has gone from strength to strength. • Anonymous said… Absolutely...my 16 year old is dealing with a chaotic class right now. He has not failed a class ever but is on the verge. He is begging to be switched out, so we are pushing the admin to allow him to move. • Anonymous said… Every time I read " depression" next to "mainstream", I hardly believe that school officials would be accommodating or patient enough to deal with emotional HFA child. I suspect they'll just drop it on the clinical psychologist laps to avoid liabilities. • Anonymous said… I just started homeschooling my 11 year old girl. I don't know what took me so long! Five years of banging my head against the wall of the public school system. What was I waiting for?? • Anonymous said… I'm thinking about pulling my 10 year old 4th grader from Public School!!! Same as you both, I'm mad at myself for letting him suffer this long. • Anonymous said… It's a fear thing. If I didn't have the K12 program I don't think I would have the guts to do it yet. • Anonymous said… Mine is in her thirties. I had to fight with the school almost constantly (and college was no picnic neither). She lacks one class from having an Associate's Degree. She lacks a science class because we just could not find a science class instructor who really cared to do any modification at all. She did have a "special populations" counselor at the college and that did help to an extent (but not when it came to the science dept ... ironic how ignorant they are). The modification would have been minor (although it is not a minor issue when not put into place) and she is, of course, expected to complete the workload and pass the exams just like everyone else. I am almost sixty. My husband just retired and I am totally burnt out. At least she does have three technology degrees from the college (and she definitely EARNED them). However, she is a grocery store clerk and has not found a job in her chosen field ... kind of doubtful (although hopeful) that she someday will. I feel like I fought with the school district the entire time she was growing up. They did not seem to understand what autism is at the time she attended school .... much less that there are different levels of autism. They tried to label her MR, but I resisted. They said that they did not have a program for autism. I told them that they were ACQUIRING one! She was mainstreamed, because I insisted. Sure, there were bullies .... both children AND adults. However, there were some of the most wonderful people .... both children AND adults .... who came to her aid at times. And, yes, I did have to go to the school and make the school officials confront the bullies. I had to actually threaten the school district with a law suit one time because the prinipical did not want to contront the bullies who were htting my child by the lockers. The principal stated that she could not punish the bullies as she did not witness the abuse. I countered that comment with the fact that she could "call them on the carpet and put them on notice" and tell them and their parents what she had heard about their behavior. Fortunately, this was resolved ..... however, it was totally inappropriate on the school's part that I had to take such measures to protect my child. I realize that I have rambled on, but this is a small slice of our experience. It seems that it is an uphill battle, but, although burnt out, I am glad that I fought. It still is not ideal. She lives with us and the government does not give her any type of check (as some people probably think). Her father and I have always been working class people. Lol ... the government relies on people like us to support welfare with the taxes they take from our paychecks. Our daughter takes care of very basic things with her part-time job money. She cannot afford to pay rent, so she lives with us. (Not many people are catagoried as "full-time" in the grocery store). She did qualify for "Obama-Care" so at least she has some type of coverage. We live in Texas (that probably explains part of it anyway). • Anonymous said… So incredibly timely for me as my 13 yo ASD son is struggling with school. I will be sharing this with this school. They have been wonderful in working with him. • Anonymous said… So very true. My son calls high school - social hell. • Anonymous said… Thank you for posting. I am going to pass this on to my daughters principal. • Anonymous said… That describes my child so well! • Anonymous said… That's why I homeschool my oldest for right now. When I have tried communicating his needs before we started school they seemed like they didn't want to help at all. • Anonymous said… The school structure just didn't fit him- so much stress from transitions, unexpected changes, assemblies, substitutes and rule changes. He would fall behind and only two teachers tried to do anything. He is homeschooling this year and is doing fantastic and also making friends! • Anonymous said… This is so spot on! Hand this to all of your Aspie's teachers! • Anonymous said… this is what I was talking to u about... • Anonymous said… Very helpful! • Anonymous said… We pulled our son from the public system in the 5th grade and enrolled him in a mainstream, small private school where he does much better socially...but it still isn't perfect. He does not require a special needs school, but he does require specialized care at times. I really wish there were more options out there for these high functioning, quirky kids. • Anonymous said… Yay! The BEST description of my son! * Anonymous said... This was my son to a T, and despite lawyers, advocates, etc. we never got him the support he really needed in school. Barriers included many teachers' unwillingness or inability to believe that this very bright, verbal, gifted and often funny kid was so significantly affected by this hidden disability; my son's unwillingness to have supports/accommodations that singled him out as "different;" and the fact that by the time he got diagnosed he already had full-blown depression as well as (I believe) PTSD from all the stress of the first 7 years of his schooling, and from being blamed for all his own problems by almost everyone. I really hope this information is passed along and helps others.....If you suspect your child may have special needs, do not put off going to a specialist!! Our pediatrician was treating him for ADHD all those years and even when he was getting in trouble in school no one suggested further testing until I got him to the right therapist. Post your comment below…
"What therapy (or therapies) are recommended for struggling teenagers on the high functioning end of the autism spectrum?"
Not all teenagers enjoy the "happy-go-lucky" days of adolescence. Unfortunately, there are those who suffer from development disorders such as Asperger’s (AS) and High-Functioning Autism (HFA). When things start to go wrong (e.g., behavioral problems, meltdowns, poor academic performance, etc.), parents often despair of not being able to effectively help their child.
Arguments are waged as to the management of “special needs” teens who act-out aggressively at home or school, commit crimes, or even attempt suicide. Sadly, our society has impoverished resources to address such issues, and while some hospitals are available, all too often the answer is jail. However, research has demonstrated that “troubled” young people on the autism spectrum do not need to be hospitalized or incarcerated to get the help they need. A home-based model of therapy called Multisystemic Therapy (MST) offers treatment services to these teenagers, as well as their parents and siblings.
AS and HFA teens with serious emotional and/or behavioral problems (e.g., substance abuse, severe depression, suicidal thoughts, delinquency, severe anxiety, antisocial behaviors, etc.) have been successfully treated through Multisystemic Therapy. This therapy shows a more hopeful and positive approach and focuses on how to help moms and dads assist their “special needs” teens and how to teach these teens to cope effectively with their schools and communities. In addition, this therapy has been found to be an effective alternative to hospitalization and incarceration.
There is heated debate in our society about the proper roles of psychotherapies and medications for teens “at risk,” as well as teens already suffering. But, what we know for sure is that AS and HFA teens who go untreated: (a) often suffer in silence, (b) can’t learn, (c) tend to act-out their emotions rather than articulate them, (d) have great difficulty forming healthy relationships with friends and family, and (e) tend to isolate themselves from constructive social contacts. Some of these “special needs” teens are placed on a trajectory for jail rather than college at a very early age.
Multisystemic Therapy is a mental health service that focuses on changing how these young people function in their natural settings (i.e., at home, school, in the neighborhood, etc.). It is designed to promote positive social behavior while decreasing problematic behavior (e.g., substance abuse, delinquency, violence, etc.). Therapy involves the following:
The family sets treatment goals, and the therapist suggests strategies to accomplish them. Specific treatments are used within therapy.
The interventions are individualized to the family's strengths and weaknesses and address the needs of the AS or HFA youngster, family, peers, school, and neighborhood.
Treatment teams usually consist of crisis caseworkers, professional counselors, and psychiatrists or psychologists who provide clinical supervision.
Therapists focus on strengthening the ability of moms and dads to raise “special needs” teens who have complex problems.
Therapists working in the home have small caseloads and are available 24-hours-a-day, 7-days-a-week.
Therapists identify strengths in the families and use these strengths to develop natural support systems and to improve parenting skills.
Therapy is a collaboration between the family and the therapist.
Multisystemic Therapy gets its name because it involves treatment that addresses each of the “systems” that factor into an adolescent’s health and well-being (e.g., his or her social circle, school environment and interactions with teachers, neighborhood environment, family, and home environment).
During therapy, therapists typically meet with the entire family in the home where they focus on such things as assessing and improving parenting skills, as well as the quality of the relationships the adolescent has outside the home (e.g., relationships with peers and the larger community). As a rule, therapists (a) are available to their clients at all times, (b) only work with a small number of families at any given time, and (c) place special emphasis on positive critiques during the therapeutic process. A typical course of therapy lasts for about four months. During this time, therapists typically meet with their families several times a week.
In clinical trials, Multisystemic Therapy has proven effective in reducing long-term rates of criminal offending in serious juvenile offenders – and in reducing their rates of out-of-home placements. Positive long-term effects of Multisystemic Therapy – even 4 years post-treatment – were found. Also, it was found that this therapy reduced long-term rates of re-arrest by 25% to 70% compared with control groups.
increases family cohesion and school attendance compared with hospitalization
is an effective alternative to psychiatric hospitalization with “special needs” teens in a psychiatric emergency
is successful in preventing a significant proportion of teens from being hospitalized
reduces symptoms of internalizing distress and depression
significantly decreases behavior problems
In addition, families who received Multisystemic Therapy were significantly more satisfied with their treatment than were families whose teenager was hospitalized.
There is an urgent need for clinically-effective, cost-effective methods to manage antisocial and criminal behavior in “special needs” teens. Oppositional Defiant Disorder, as well as Conduct Disorder, is increasingly prevalent in today’s society and is associated with a range of negative outcomes.
Quantitative reviews carried out for the National Institute for Health and Clinical Excellence have identified Multisystemic Therapy as one of the most promising interventions for (a) reducing antisocial or offending behavior and (b) improving individual and family functioning. If you have an AS or HFA teen who is acting-out in self-destructive ways, consult your family doctor for a referral to a mental health professional.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
