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The Long-Term Outcomes for People with Autism Spectrum Disorder

"What are some of the long term outcomes for people with ASD level 1 or high functioning autism? I'd like to know what to expect when my 7 y.o. son becomes an adult and leaves the nest."

The long term outcomes for those with High-Functioning Autism (HFA) and Asperger's 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 symptoms of the disorder 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 individuals on the autism spectrum suffer from depression and OCD as adults, these secondary characteristics can negatively impact how the individual develops and grows into adulthood. Several research studies have looked at outcomes in people on the spectrum. In one study, outcome was looked at in a cross section of people with the disorder. 
 
After a five year follow-up using specific outcome criteria, the outcome was found to be good in 27% of cases. However, in 26% of cases, the individual maintained a very restricted life, with no consistent job record - and few friends.

Another study looked at outcomes in those on the spectrum 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 symptoms (e.g., 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 eight year follow-up of a specialized job program for those with HFA and Asperger's to see if such a program helped improve job outcome. For those with an IQ of 60+, 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 people with the disorder.





==> Videos for Parents of Children and Teens with ASD


PARENTS' COMMENTS:

•    Anonymous said... Depends on many things. Will they have something to medically help them in the future? Did they attend enough social skills classes to learn how to cope and such? Did their parents facilitate them "fitting into" society rather than making tons of exceptions for them? Many questions.
•    Anonymous said... I am HF autistic, never attended a social skills class, never had any assistance, and now am approaching 28 years old. I am married, have 2 children and have a full time job in real estate. My eldest is HF autistic too, we are teaching him HTML programming at the moment as he loves computer games. Eventually I want to teach him C++ and the like so he can make his own games. Our youngest is suspected to be on the spectrum also but he hasn't beed diagnosed yet (he's 2)
•    Anonymous said... It takes the dedication of a parent, caregiver. I always wondered that same question. I asked some specialists, doctors, and even with all the advances in therapy , it still comes down to many factors. My kids have jobs, and are in college. I was never able to rely on a school system to do the work, and get the therapy the needed. Being creative, with social skills is a must.
•    Anonymous said... my aspergers husband has been married to me for 48 yrs,his obsession is buses,so he is a bus driver,our oldest a/s daughter trained as legal sec but through mental healtth probs cant work at moment,younger a/s daughter is a rep for a charity,my a/s sister in law is an author,many books published,luckily most of mine have done o,k,both daughters lead independant lives,
•    Anonymous said... My aspie husband functions fine but does struggle to keep a job, his bosses love him as he is a hard worker, but he quits because he has never found a boss he likes and doesn't always understand why they don't do things his way. I work with lots of people with disabilities and most adults with aspergers cope better as adults than as children.
•    Anonymous said... My hubby has the perfect engineering job. Suits him and his skills perfectly. I have to manage alot of the other parts of life (social, not black and white issues). In his defense he has learned as we have gone on (from a counselor and myself) how to deal with them too. The right employment, support, and taught skills make all the difference.
•    Anonymous said... My son was just diagnosed (finally) with aspergers on last Tuesday..he's six and we really need to get him into social skills classes. Any recommendations on where those classes would be or where we should start? The school IEP we setup includes him going to social group 30 mins a week but that's it socially...
•    Anonymous said... Things seem to have turned out ok for Bill Gates.

Post your comment below…

Gender Differences in High-Functioning Autism

"It seems that there are more boys than girls with the high functioning version of autism. Is this true? If so, what accounts for the difference?"

Interestingly, different research studies list the ratio of males to females with High-Functioning Autism (HFA) as being anywhere from 4-10 to 4-1 (i.e., some research suggests that for every 4 males, there is 1 female).

Other studies suggest that the male population is much higher (8-10) relative to females. Obviously, much research is needed in this area.

As there is no known specific cause of autism as yet, researchers don’t know why there seems to be such a diagnostic difference between boys and girls.

A couple things could account for this difference:
1. There could be a hereditary or structural difference in boys that account for such a difference. There are other disorders associated mostly with boys (e.g., hemophilia) that have been found to be related to the genetic basis of the disease.

2. There could be a difference in the way society and therapists diagnose HFA in boys and girls. The behavioral expectations between boys and girls are such that boys are less likely than girls to be “diagnosed” with shyness - and could instead be diagnosed with a mild form of autism. Because the symptoms of HFA aren’t as readily diagnosable as some diseases, mistakes in diagnosis are very possible.

3. Girls with the disorder tend to be safeguarded and nurtured by their “neurotypical” friends who may assist them to deal with challenging interpersonal situations. 

4. Acceptance from peers can cover up many of the problems a girl on the autism spectrum has, so she isn’t recognized by parents, teachers, and other adults. Thus, they are not as likely to suggest psychological and social evaluations.

5. Females on the autism spectrum aren't usually aggressive once they get upset; instead, they tend to be withdrawn and may very easily "fly under the radar" in classrooms and other interpersonal situations (i.e., they often “shutdown” rather than “meltdown”).

As one lady with Asperger's stated: "I am a 50 year old female. My mother was told that I could not start kindergarten when I was 5 years old because I 'was not social enough'. I was held back, even though, at age 7, I was 'still not social enough'. Well, I didn't want to go over and initiate conversation and play tea with the other girls; I thought I was going to school to read BOOKS not socialize. Things haven't changed. After getting my Univ. of WA degree in American history at the age of 47, I was diagnosed at the time with Aspergers. What a relief as I suffered for decades and knew it wasn't 'just shyness'. Girls are 'quiet' sufferers and can frequently be suicidal when socializing is so important with girls and when getting jobs. I am glad I decided to go to college late in life; I had myself diagnosed and a thicker skin by then - I didn't care about social stuff when in college."

6. Females with the disorder can communicate their feelings in a calmer way as compared to their male counterparts.





As a side note, there have been several studies linking HFA and Asperger's in adults with gender identity disorder (i.e., a disorder where an individual feels like they are actually a member of the opposite gender they appear to be).

The Confusing Social Behavior of Kids on the Autism Spectrum

The Gift of High-Functioning Autism and Asperger's


Children with High-Functioning Autism and Asperger's and their families spend a great deal of time focused on the needs or limitations of the affected child. However, these young people also have abilities that many "typical" children do not.

It is important that families talk about the strengths and abilities that their "special needs" child does have. For example:
  • they are often very creative
  • many have a sort of natural genius
  • many have above average intelligence
  • they can see the world very differently to the average person, which can mean different priorities or different sensory experience 
  • their overriding priority is often to solve a problem rather than satisfy the social or emotional needs of others
  • they are renowned for being direct, speaking their mind and being honest and determined 
  • they can be a loyal friend 
  • they give considerable attention to detail 
  • they have a distinct sense of humor 
  • they have a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people 
  • they have a strong sense of social justice 
  • they may perceive errors that are not apparent to others 
  • they often actively seek and enjoy solitude 
  • they value being creative rather than co-operative 

It is important to celebrate children on the autism spectrum for what and who they are, recognizing their individual strengths and abilities. Doing this on a daily basis enhances both self-esteem and self-confidence (two things that many of these kids are short on). 


More resources for parents of children and teens with Asperger's and High-Functioning Autism:


 Where does your child excel? Please comment below...

•    Anonymous said… My daughter also has Asperger's Syndrome. Recently, she has been having a lot of trouble with tics (twitching of her feet and hands, biting her lip, and rolling of her eyes.) Whenever she is feeling stressed out, her tics are worse and she complains that they cause her hands, feet and eyes to hurt. She is already on Benztropine to help with the tics, but sometimes they seem out of control. I wish there were more doctors that specialized in Asperger's Syndrome in Maryland!
•    Anonymous said… my daughter was recently diagnosed. I don't know anyone that has a girl! I would love to talk to you! My daughter is exceptional, I rarely have to get on to her. Mostly just not saying mean things. Which she doesn't think are mean.
•    Anonymous said… My kid is pretty awesome! She struggles, but has an amazing "code" that she lives by. She insists that people be treated fairly.
•    Anonymous said… No child has ALL these positive traits, but they all have some of the traits (some more than others)...
•    Anonymous said… See I struggle with this. My daughter is sweet and definitely not all bad. But I struggle to see these things as strengths.
•    Anonymous said… So true to many of these!
•    Anonymous said... Attention to detail.
•    Anonymous said... Every evening I tell my son all the things he has done that day that make me proud. And I ask if he is proud of himself. I use very specific events so he will be more likely to continue those behaviors. I haven't had a night when i couldn't find something to praise him for.
•    Anonymous said... Julian is very smart.. He has an iq of 99.
•    Anonymous said... My 10yo son is the kindest kid I know. He also has a deep love for animals. All he wants out of life is peace and fairness (and ice cream...) He is extremely smart and I know he will contribute a lot to society during his lifetime. I think we'd all be a lot better off if more people thought like aspies:)
•    Anonymous said... My 12yr old son has a deep love for animals as well, he is gifted in playing the drums..all he has to do is hear a song a few times and he can play it. Amazing
•    Anonymous said... My daughter, who is 14 is a talented musician. She can play just about any band instrument you put in her hands and has only had formal teaching on one single instrument!
•    Anonymous said... My son (who is 10) is gifted e.g. in math and orienteering. He always knows his location. When he was about three or four years old, he knew the names of the streets.
•    Anonymous said... My son (who is 14) is artistically and musically gifted. These talents help him with his self-esteem and help define who he is in a positive way.
•    Anonymous said... My son is 9 and is a human calculator! He is brilliant when it comes to math. He gets it even when no one has taught him. Amazing.
•    Anonymous said... My son who is 16 is also artistic.
•    Anonymous said... Would have to say his imagination... Amazing ♥
•    Anoymous said… My 13 year old Aspie has a way with animals and babies. They just love him! He is amazing at history and often likes to stump us on unusual facts lol.
 
*    My daughter with Asperger's taught herself to play the guitar, she also taught herself to do tricks on the skateboard & she's amazing with animals

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Teens on the Spectrum

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here
to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...