What are the long term outcomes for people with Aspergers?

Filed under:Other — posted by admin on April 30, 2008 @ 4:12 am

The long term outcomes for those with Aspergers syndrome depends on the severity of their symptoms, their baseline IQ, their ability to communicate and what kinds of interventions and support they receive. Those who come from supportive families, retain a reasonable sense of self-esteem, and become relatively well-educated, stand a good chance of getting into solid relationships, finding good jobs and having a normal life.

In other cases, the Aspergers symptoms are severe enough to affect speech and interpersonal relationship or the individual’s IQ is low enough to impair their ability to find a good job, leaving them with a low paying job or on disability.

Because some Aspergers syndrome individuals suffer from depression and OCD as adults, these secondary characteristics can negatively impact how an Aspergers syndrome individual develops and grows into adulthood. Some have landed in prison for violent behavior against others.

Several research studies have looked at outcome in Aspergers syndrome. In one study, outcome was looked at in a cross section of sufferers. After a five year followup using specific outcome criteria, the outcome in Aspergers syndrome was found to be good in 27% of cases. However, in 26% of cases, the individual maintained a very restricted life, with no occupation/activity to occupy their time and no friends.

Another study looked at outcome in those who had Aspergers syndrome to see which factors were more related to a poor or good outcome over time. It was found that language and communication skills were the greatest predictor of good outcome, with social interaction skills being a secondary predictor. The actual Aspergers symptoms like ritual behaviors and obsessions were less likely predictors of outcome. The study indicated that early intervention directed at improving communication was a good idea.

Finally, researchers studied an 8 year followup of a specialized job program for those with Aspergers syndrome to see if such a program helped improve job outcome. For those with Aspergers syndrome (IQ 60+) over an 8 year period, approximately 68 percent of clients found employment. Of the 192 jobs found, most of the jobs were permanent contract work and most involved administrative, technical or computing work. The study indicated that programs like these can be helpful in improving career outcome in Aspergers syndrome individuals.

comments (28)

28 comments »

I have a 16-year old Asperger son who is just about to sit his GCSE’s. His total indifference to revising or behaving in class will end up with him failing all of them. What sort of career or job can he possibly hope to get with no qualifications. He finds it very difficult to accept rules even though they are there to help him. Help

Comment by Jayne Smith — April 30, 2008 @ 6:20 am
My son was statemented just over 2 years ago. He will be 14 in August, It was also confirmed he had Dyslexia on a level 8.
I always know something wasnt right, but got told he was rude and arrogant. He now has bad mood swings, he shout and gets aggressive although he has not hit out yet, he says he will. I dont know what to say to him, he doesnt want to do anything ie: sport, clubs. I also have a 4yr old who has started coping him. I have to lie when I take him to denist, doctors, Hospital, I had to pin him in the denist chair just so she could check his teeth. I just dont know what to do? any advise I would be grarteful.

Comment by karen baker — April 30, 2008 @ 6:25 am
Thank you for this information. My son is 7 yrs old with Aspergers and I wondered how life might turn out for him. Thanks for the insight.

Comment by Kellie Lemmons — April 30, 2008 @ 7:29 am
dave,
My ` 17 year old son Tyler will be starting a 15 week course of neurofeedback. They will be working on social skills, attention, and anxiety. My question to you is what results have you seen or heard of concerning neurofeedback and is this a good route to go?
Thanks for your time.
Lori in montana

Comment by lori wubben — April 30, 2008 @ 9:19 am
I just wanted to respond about the neurofeedback. My son currently does neurofeedback, he’s 9 years old, diagnosed with Aspger Syndrome. The most progress we’ve seen has been in his ability to recognize feelings of others and to consider someone else’s point of view. He never really did this before. We’ve also seen some behavior changes (for the better). We are on a 4 week break (which is normal to do in NF) and will be going back for another brain scan sometime in May. The therapist told us he will see if the brain has been changing on its own. If it has, he will target any other areas that need it or if everything seems well, we will not have to continue NF. That’s the gold with NF, to have the brain learn on its own & not to have to constantly train it.

Comment by Lela — April 30, 2008 @ 9:48 am
My son is going to be 22 and still struggles everyday. He is an alcoholic, and uses cannibus to relieve anxiety. I have him in rehabilitative counciling and he is on antabuse. He is very depressed with no friends of his age. I am exhausted trying to help him find his way. I can’t work because he is a full time job. Yesterday was morn psych and afternoon rehab counciling. In between I try to keep him occupied and not having temper flairs. I am 56 and a cancer survivor with no back up help. I am discouraged and getting hopeless. Money goes quickly as insurance programs are few and far between.Yesterday I was repremanded for being an enable by the pschiatrist. (whom we see twice a year for meds.) My answer is – I will not put him on the streets for an assured demise of my son. Where is relief that I don’t have to pay a small fortune for?

Comment by Colette DeGrasse — April 30, 2008 @ 11:17 am
Hi Dave:

Congratulation on your favourite team final win of 1-0 over Barcelona ( My son is a fan of Arsenal ) thanks for your informative article on long term outcomes for those with Asperger.

Comment by Nariman Naderi — April 30, 2008 @ 11:27 am
response to the question #3, the hopeless, 56 year old cancer survivor with the 22 year old son that needs help.
i have no physical answer for your questions, but i believe that when we pray, God hears our requests and will answer. i pray right now that God will send you someone that feels your pain and someone that can help you to physically and financially take care of your son. you are a brave mother and i ask God to be with you as you go through out your day, today. God Bless You and keep up the good work.

Comment by Robin — April 30, 2008 @ 11:47 am
continued from comment #4, it is robin again, i now see that you have a name, i will continue to pray for you, colette degrasse.

Comment by Robin — April 30, 2008 @ 11:50 am
My question is what is neurofeedback and where can I go to look into it? I was also wondering how do I help my 17 year old son to use self restraint last week he cut the neighbor’s tire just because he had never done it before and the idea popped into his head.
Thank you Kristina Foss

Comment by Kristina — April 30, 2008 @ 2:57 pm
My son is aspergers and a junior in high school. He is 18 and I did plan it that way, to have him be older. It is a struggle with high school teachers. They are trained (haha) in aspergers but if a child (like mine) looks and acts almost completly normal (I hate using that word!) then it is more of a struggle! He has been sent to detention many time this semester for being tardy to his first period class (as running in when the bell has or is ringing!) I feel as if he is a kid with a difference who is desperatly trying to get there to be educated and not trying to cut class!! What a difficult thing for a kid with AS. He is planning to go on to higher education after we make it through the senior year. It is so frightening to me to think he will be living else where in a few years at the least! I seem to get through to him most of the time that this is my job to get him to the point where he can do this life thing on his own! WOW! It is indescribable…this AS life! Thanks Kim

Comment by kim — April 30, 2008 @ 3:58 pm
hey thank you for all you and your family do to encourage us……..i hope you team did well in the european cuup.

Comment by Robin — April 30, 2008 @ 4:33 pm
My story is almost the same as Collette DeGrasse.I have a son 22 who is depressed and trying to self-medicate. I can’t get him to buy into working and since we have moved to Washington state three years ago he doesn’t have any friends at all. He loves cats and other animals (small dogs) but because of the liability I can’t get anyone to allow him to volunteer at an office. I have to work full time and I worry about him alot. I have tried to get him to go to community college and also to an adult Asperger’s group but he says he does better with normal people. I don’t think most people understand what we go through. His father died about 4 years and he actually went and laid upon the grave several times. The high school was no help at all and after his father died they were really different towards him as if before that they had been playing up towards his father because they were afraid of him. I would like to see him stop using stimulants to achieve some kind of feeling but we have tried medications and alot of them are psychotic and I think much worse than pot. I wish Collette lived near us and maybe our sons could get together. It is so hard to find anything for this age group that doesn’t or can’t work a job. Thank you and God bless you all.

Comment by Gloria — April 30, 2008 @ 4:53 pm
You said that in some cases, “Aspergers symptoms are severe enough to affect speech”. While it’s true that Aspergers often gives rise to pedantic speech, the condition by itself does not otherwise “affect” speech. This is the basic difference between Aspergers and High Functioning Autism (which does impair speech).

You also said that sometimes the “individual’s IQ is low enough…”. Once again, the Aspergers condition does not imact IQ.

Note: Aspergers often co-exists with other conditions (commorbids). These are widely varied and could account for the issues you mention. As commorbids though, they are not strictly part of the aspergers condition.

Comment by Gavin Bollard — April 30, 2008 @ 6:39 pm
Where is the other 43%. Can you tell us where to find these studies?

Comment by Tara Fishler — April 30, 2008 @ 10:29 pm
My son is 14 years old and has been diagnosed with Aspergers since the fourth grade. My husband and I are so beyond frustrated right now with our school corpoation and to honest almost all people anymore. We feel that if our son had leg braces on, then he would be treated with the respect he deserves. He is a great kid and has come along way through group thearapies and so on, but he still at the end of the day has Aspergars. We feel the lack of support from our insurance group to help pay for the cost for programs tht would benefit him to be a productive citizen are not avaliable and we are just so discouraged. I am very greatful to Daves website. It has been one of only a rare few blessings of help. Any advice on how to fight the system and get people to understand Aspergars when they don’t believe it is real, pleae let me know. Thank you, and God bless all of you for not giving up and loving your child enough to fight for them. Stephanie

Comment by Stephanie — May 1, 2008 @ 12:22 pm
My son is in 7th grade, Junior High with Aspergers. He has now brought home his 2nd F in an Honors English class. Yes, he does have an IEP,only for social/emotional issues. But like one comment I read because he is normal looking ( I too do not like to use that term), I don’t think these counselors/teachers get it. I questioned his 6th grade teachers re:Honors class in anything and she promoted it. Now he has one F on a report card and now another one on this last progress report!!!!! Thing is they all agree (the team of teachers he has) know that he is very intelligent, but they can’t give the grades when he does not turn in work, or “does not know where it is”!!! Really don’t know if I’ll make thru Jr. High!!!!

Comment by Kathleen Tuntland — May 2, 2008 @ 10:18 pm
My 28 year old son look “normal” too, in fact every one say he is gorgeous. He was diagnose that has AS when he was 21, that explained the way he walks kind of stiffed, he doesn’t look at you when someone talk to him, he looks at someone when he talks to them at about 5% compare to “normal” people. He is about 5% able to keep his schedule on time, the rest of 95% he is late or no show when he feels the job gets to him, actually not his duties, but the people who is playing game / office politics with him, so he would stay home and lock himsel in the room, he said that the stress get to him that he has to recuperate before he can function again, the trouble is that sometimes it take a week. It must has been so much suffering to go thru life with his condition. Just yesterday I saw him with his bleached hair and his shape eye brows, he looks so gay. I am worried and concern, now that people in the office will definately pick on him even more. I am not sure if he is gay, but why would a regular guy plug his eyebrows?
To begin with it is very hard for him to be around people not alone make any conversations, now this? I am not sure what to say to him but I did mention that he looks gay, I didn’t tell him my concern.

Comment by Sally Chateau — May 4, 2008 @ 7:29 am
My son is 11yrs and was Diagnosed AS a year ago. It has been a very trying year because he was very much in denial. He has just recently excepted his AS. He is a very bright boy with a very high IQ, but getting him to do every day activities is a challenge. He lives video games. I try to be supportive but when it comes to doing other things he is moody and miserable, he just wants to get back to video games! I do try to restrict his play time, for ex. he does not play on Sunday’s, but he still consistently asks to the point of complete frustration on my part. I guess I am at a loss on how to turn this around without a blowout!

Comment by Melanie Bergeson — May 4, 2008 @ 10:05 pm
Hi, I’ve been reading all the above comments and do empathise. My son is 11 and has AS, He looks and behaves normally [I hate that word too]most of the time, but has trouble processing information and retrieving it when needed. His biggest issue is social skills, and I am intrigued by the neurofeedback that is mentioned. Is it available in the UK? and how does one access it? Any information would be welcome.

Comment by S Cummins — May 5, 2008 @ 12:46 am
I have a 14 year old son who is going through the process of diagnosing Aspergers Syndrome. He has gone through 2 of the 3 phases and of the 2 the “testers” say he has the disorder. My only problem is as I read through the blogs, I see the issue of “normal” seeming to be uncomfortable. My son not only Looks normal but also acts normal to people on the outside. But his dr.s say that with his OCD, Depression, low self esteem, self harming, poor social skills, and other various symptoms that go along with AS, they are convinced he has AS. I am also convinced. but I can’t convince others. My own parents feel as if he is a “bad child” I have tried to educate them but to no avail. Does anyone have any suggestions, or do I just have to keep saying to myself and him, that he is NOT a bad kid, and that he is just special, mostly to me? I hope I have not offended anyone , this is my first time and I wish I knew about this earlier.

Comment by Sharon Meager — May 8, 2008 @ 2:35 pm
My son attends an alternative school in hertfordshire called nature kids with a lot of outdoor play; he spends hours on trampoline. Mixed group of about 20 kids with different needs, some home educated. After tribunal the borough is now paying for this and as well a one to one tutor at home.

Comment by emotionalhealing dot co dot uk — May 9, 2008 @ 10:15 am
I just qrinch when I read these notes from all these suffering parents, and suffering children. My son also has been diagnosed with AS., 9 yr. old. It was really hard to take, but he also “looks normal”, and most of the time acts somewhat “normal”. But I am dreading the years to come from reading all this. Right now we are doing pretty good, he has an IEP, and gets O.T. and speech, and has a scribe at a public school, but every year the school trys to delete something. I just keep fighting them. I think the hardest thing is having the other kids not accepting him for who he is. He has obesessions, with pirates, and now Indiana Jones, he seems to follow the movies. But the kids constantly ask his father and myself at functions, “Is that all he talks about is pirates, is that all he does is plat pirates”? Why they can’t accept him for this, I don’t understand, so what he likes pirates, thats just who he is. From what I’ve read here it looks like it just gets harder. I’m scared, I’m an older parent 47, and we are scared if we can handle his temper (which he only seems to have with us at home)when he gets older. We’re pretty strick, he likes video games also, but he only gets to play for a reward for chores or good grades or just doing something nice for someone. The doctor has givin him Tenex a high blood pressure pill to help with focus, he can’t take the stimulants. Has anyone ever tried it, we can’t tell yet? Just wanted to vent and tell you all I’m thinking of you and may need you all in a big way in years to come. God Bless You All, and your children. God Help Us!!!!!!!

Comment by ELAINE — May 9, 2008 @ 1:28 pm
I am a 35 year old male with aspergers. I’ve been a police officer for 11 years now and find it very hard to communicate with others. Specifically I find it hard to maintain eye contact. It’s gotten progressively worse over the years and I hope I can make it to retirement. I try desperately to “act normal” but it doesn’t come natural to me. I envy people that are able to carry on conversations with ease. Ity actually amazes me. I feel more comfortable when I’m by myself. I feel more in control. I guess I’m a loner. Anyway,if there’s anyone out there who feels like me please feel free to comment or ask me any questions. I feel a lot better when I talk about it. Thank-you

Comment by Dave — May 12, 2008 @ 1:03 am
Today is such a really bad day for me. I feel like I have failed my son, who was diagnosed with Aspergers when he was about 9. The Dr. put him on meds but I hated the side effects because it made him even more docile and he lost so much weight so quickly. I never took him back and now he is 18 and failing in school, he cuts himself and seems so down all the time. I took him to a psychiatrist and she put him on antidepressents and it just does not seem to be the solution. I don’t know what else to do. He has always been a good kid and never had any behavior issues in school, but just won’t do the work. He has even successfully passed his OGT subjects with pretty high scores, except for in math but he just will not perform in school. Is it too late for me to help him now that he is 18. He has been on an IEP since 8th grade but it is not helping at all. I guess I have been in denial all these years thinking with patience and prodding that I could help him at least be successful in school but I was so wrong. I just want to know if I can help him.

Comment by Selena Moore — May 30, 2009 @ 11:30 am
My grandson has just been diagnosed with aspergers. He is 9. I suspected he had it 2 years ago when my neighbor loaned me a book on adults with aspergers. Her husband was diagnosed AS and she thought my husband had it. As I read I could clearly see that she was right. I read about 40 books, pretty much everything I could find and at one point read how you could teach an aspie to do anything but their brains would always work the same way. Then the book proceeded to perfectly describe MY brain and how it functioned.
My husband knew he would be a physicist at age 14. At age 13 I was obsessed with relationships and read everything I could find on the subject. I also moved 83 times in my life. (Great LAB for an aspie interested in relationships). No one would ever guess that I am an aspie unless I tell them some of the things from my life. In my whole life I never read one thing that made me understand myself until I started reading about aspergers. Suddenly my whole life made sense.
For the parents who feel like they have failed or are failing their children. I can assure you that your best is good enough. I was taught that I would want to grow up and be married and have children. I believed it and did just that even though I was a straight A student at Purdue University and was nominated for the Oxford-Rhodes scholarship. (I didn’t fill out the application because no one told me about that so I did not know what it even was at the time).
I was often confused by things in parenting like when I was 20 and I read in a book that it was normal for a mother to feel compassion when her child cried. I had 2 children. I had read that if a child cried it was because the child could not speak so you should try to find out what made it stop crying. That would be how you would know what the child needed. Even at the time I thought it was odd that it had never crossed my mind that the child might be uncomfortable or hurting. Regardless, from that moment on I had compassion when any child cried. The weird part to me was that I had to be taught that from a book. Experience alone did not cause me to understand that or even consider that possibility. People used to accuse me of playing dumb. I would feel panicked because if I was “acting dumb” I truly WAS dumb and everyone thought it was just an act.
So many here express sadness that their children are alone. I think that actually teaches your child that he/she should feel sad if they are alone. Honestly people are hard for aspies and I do not believe we feel loneliness the same way as neuro-typicals do.
I know you have dreams for your children and it is very important that you teach your personal values to an AS child but preferences are not the same as values and as a parent I think you might feel better if you could believe that you may never understand why some things make your child feel better and some things just make them feel overwhelmed. It’s that simple. You can teach them to feel bad for the things they don’t do or even “get” that other kids and adults find worthwhile and rewarding or you can watch and see if they have sufficient interests for them to feel rewarded by their lives already.
I think being a parent of an AS child would be unexplainably tedious and would require the patience of Job because life seems unfair to us all the time, even when it isn’t. As a 53 year old adult, I know that we misinterpret a lot when it comes to relationships. It hurts our feelings when we feel like we’re not getting it “right”. We tend to be “all or nothing” people. We often can’t tell whose fault it is when things don’t go smoothly. We wonder if we are being made fun of or being exploited. We freak out and either have a melt down we retreat emotionally into a world where no one can follow us. You can’t change that. We are always trying to make our lives perfectly ordered and when we fail to do that we take it personal.
However as a note of encouragement, we know who has our backs. In spite of our poor social skills at communicating it, we do appreciate and are very aware of when someone has concern for us. We just don’t need them to fix this like they think they need to in order to feel like they have not failed us. We have useful lives. We are not in a bubble while life just passes us by like it may seem to you sometimes.
AS is what it is. I read once that all suffering ceases to be suffering when it has meaning. Someday the meaning will be clear for this too, so in the mean time I suggest that you don’t add beating yourself up to an already nearly impossible job. I used to get accused of thinking too much. I really do not have any problem with the fact that no one could make me into a neuro-typical thinker, because I realize that the “up” side of being an aspie is that we see things that NT’s can’t and because of this we often change the world in profound ways for the better.

Comment by moe — August 4, 2009 @ 12:45 pm
well i am 34 & have aspergers, i can talk & interact & my IQ isnt small BUT i have had “”"alot”"” of trouble…not that u would think so…as i can hold down jobs ok & i have gotten married (twice) have 6 kids, help at the local playgroup & avoided a criminal record & all the rest of societies expectations ….but i hate my pretend life! it is what all of the NT people think is ideal…NOT ME…i would prefer to be a hermit & be naked as a cave dweller & do things like sit down on the middle of the sidewalk when my feet get tired (not the “normal” thing to do!) & when i have conversations with people i want to just speak my mind & i know THAT wouldnt go down very well (so i dont)…i have huge dramas keeping time…& i never seem to know when to eat or sleep…try raising kids properly when i know its supposed to be MY job to keep their routines & have them brush their teeth & be in bed at the right time & i have no clue myself! try being misunderstood by EVERYONE! including the closest people in your life & not being allowed to be your true self & feeling so out of sorts that the only control that u can get over your existance is by being overly obsessive about the little things just so u get a feeling of correctness when u have the room u live in obsessivly clean even if it bothers those around u as much as they bother u when they disrupt the perfectness & u know because u arn’t stupid that its all wrong & there seems no end in sight & nor will there ever be one! so u suffer from depression because your life is not right & u know the answers to anything that a shrink could ever help u with & the answer to all of it is…THE LUCKY ONES DO IT FINE! the people in their lives the choices they made for themselves all WITH THE FLOW!!! i have begun to go with my flow…i dont ever wear shoes & i live in a very rural area so i can get away with a more unkempt appearance & i shaved my head bald (weird for a woman) & i can get away with that here as i have few neighbours & my kids can be less skeduled & i can be more natural! i have prodjects to keep my idle hands buizy & my mind occopied & i have found others like me…doing just as i am!! & i say good-bye to all the judgemental fools if u dont like me as hippy as i am, then go jump!….& by the way…most of the ‘true’ hippies around here are on the spectrum…& most of us are not on drugs & dont need to be!

Comment by trudy beckham — December 28, 2009 @ 10:27 am
me again…sorry if i sounded a tad bitter with the world…it was just momentary…my life is ok & i like it as long as its MINE!xx
also i get u totaly moe! its been much like that for me also!

Comment by trudy beckham — December 28, 2009 @ 10:46 am