Will a Child with Autism Spectrum (High Functioning) Ever Be Independent?

P.D.

Take a look at any almost 3 year old child, and all anyone can say is that they are a ball of potential. Yours is not different. You don't have any clue what they will do, NOBODY DOES! But, I can tell you this, what your child does in the future is up to him. Your job, just like every other parents job is to make sure that your child has meaningful choices for his life when he is the one that gets to make the decisions. The truth is not who did what and what we think anybody out there has, it is that your child, and my child (18 with asperger) is more like other children than they are different. As hard as it is, stop focusing on what you are afraid he won't do, and do what you can do now to make sure that when he is 18, he can decided what he wants, not out of default for what he cannot choose, but from all the things he can do because his parents saw to it that he got every chance available to him. THAT is no different than any other parent. You are still a parent. He is still a child, he will have a personality and likes and dislikes, and that will not be infulenced at all by his autism, trust me on this one.

There are some big misconceptions out there. I am not going to candy coat it for you and say that this is going to be easy peasy, it won't. You have a lot to do, alot of extras that most parents never think about. You will have to pay for therapy so that your child will learn things that other children learn without anyone teaching them anything, and other parents take for granted are free. That stinks, but if you focus on it, it does you no good. So you do what you have to do, you get more therapy, rather than less, and you know that every ounce of what you do for your son will pay off in his choices later. Just like the shock now, there are more shocks to come. Instead of being a deer in the headlights, it will help you to work to make the path better than you found it for the next parent who gets this diagnosis. Walk in every Autism walk, send letters to your congressman when you find your insurance coverage unjust, advocate for better IDEA services in your school and others, and be the best advocate for your son that you can, no matter how unfair things seem at the time. It may be unfair, but you don't have time to fix it for your son, so get the best you can for him, and make the world better in the future. Pay when you have to, he has no time to wait on fair.

You will find that the road is difficult. The first thing I want you to know is that you will need to provide the lions share of his therapy. You are going to read things that will be very rosey, that will say that the school should by law provide you with all kinds of things. High functioning children do not always qualify for public services, and your experience may not be easy with the public schools. Start with www.wrightslaw.com and read about advocacy. Remember this, while the school distirct is required to evaluate your son if you request it, they may only screen him, and they may find that there is no educational need for services, even if they evaluate and find that he does have a disablity. Be prepared by learning all you can about navagiting this system. What you say and how you say it is important (if it did not happen in writing, it never happened) I work as an educational advocate for children with disablities, and there are advocates in your area who can help you learn what to do if it feels too difficult. I am telling you this because most people assume that this will be the easy part, and it is not. It is the most difficult part of your struggle to think that your child should get something for free and have someone just tell you no.

If you have not been to a Developmental Pediatrician make that appointment now. You need a full evaluation that is many, many pages long, that incorperates Speech and Language, Occupational Therapy, Neurolgy, Genetics, ENT, Audiology, Psychological, Educational and all other areas that are relevant to your son's case, such that you have a complete treatment plan to follow. You should know fromt his report what kinds of theraputic interventions will be most helpful. This will probably include Speech therapy, Congnative Behaviroal therapy, Play therapy, Occupational therapy, Social Skills Classes, and educational interventions. Expect to be driving your son to therapy almost every day for a while, and do as much as you can do as early as you can. If you get services from the school, always supplement with private services, because the school, if they provide any service, is only required to make your child functional, and you want to maximize your son's potential, so that he has all those choices when he is 18 years old.

Remember too, these are his choices. He may choose something you don't like, just like all other children when they reach adulthood, so you don't have any more control over him than any other parent.

You are a parent, and he is a child and you have more in common with other parents and he with other children than you don't have. He will most deffinetly graduate from High School, if he is in special education, he will absolutly graduate-I know that sounds strange, but he can either graduate with an IEP on a regular diploma, or on an IEP based diploma, but if he has an IEP, the school is going to make sure that he graduates. If he is capable of going to college, he can go, and if he needs help there are programs in college for kids with disabilies, which he may or may not need. If he needs help as an adult, there are progams, and in the future, they may be better equiped to help your son. That is where you should be doing your part, to make the world a better place for those who come after you, just as those of us with kids who are getting to that 18 point are now advocating to make those services better for you. Pass the ball, and blaze a trail, and do every thing you can do to make his future about his choices meaning something to him. That is what every parent does.

M.

8 moms found this helpful

All one has to do is look down the halls of Microsoft. In the programming world you can't swing a cat without hitting someone with HFA or who's an Aspie. In other professions, it's more rare, but with few exceptions they tend to be top in their fields.

There are soooooo many facets and angles to autism... My cousin will never get beyond age 2 developmentally (minimal functioning, obviously), and I have 2 good friends who are both HFA; one is a filmmaker and the other an intelligence analyst. My H is friends with many more in computer-land. The Dx doesn't make the individual.

7 moms found this helpful

Yes, there are children with ASD who do go to college and are able to live an full, independent life. Of course, a lot of it depends on where the child falls on the autism spectrum and whether or not they received the intensive early intervention and therapy that they need.

My son was 18-months when he was first diagnosed with mild-moderate autism spectrum disorder. He's 7 now and is now considered to be high-functioning. He's just entered 2nd grade and spends 99% of his week in a general ed classroom with some special ed support. Ever since we first suspected that autism may be an issue, we worked hard to get him the therapy and assistance he has needed and the behavioral issues that keep on cropping up here and there have been a real challenge but he's pulling in A's and B's in most of his subjects and he wants to be "Sea World Manager Cameron" someday so I'm thinking, why not? He may have to work extra hard to get there but that will be his success story that he can share with others facing similar difficulties someday so my husband and I are going to be there to support him every step of the way. That's just how I see it.

I hope this helps gives you inspiration for your son. My best advise for you is don't let anyone tell you what your child can or will be able to do. No one knows for sure what your son is all about. That is for you and for him to discover. Best wishes to you and your son.

6 moms found this helpful

My husband works in the computer industry. There are several people he works with that are really great at computers, but could be described as socially awkward, quirky, or geeky. He never thought twice about it until our son was diagnosed with Aspergers, and a counselor told him that he might have it, too. He now recognizes some of those same characteristics in the people he works with. I think they've found an industry where they successfully fit in, and use their strengths(working with computers), and avoid their weaknesses(interacting with people or physically demanding work).

6 moms found this helpful

My son is in the 3rd grade (so not nearly an adult yet) but there is no sign that he will be anything less than a fully functional independent adult. We have every expectation that he will graduate high school, go to college and choose a career.....just as his two non-ASD siblings will do.

Now that I have spent time with someone with HFA and have read so much about it, I have no doubt that certain people I worked with in the past would be on the spectrum if they were children today. All of the signs are there, but they are independent wonderful people who happen to have a few little quirks that go unnoticed by most adults around them.

Take it one day at a time and get him every opportunity you can now while he is young. The one regret I can tell you that my husband and I have is that we didn't go ahead and get him going in sports (baseball mainly) when he was first old enough for it. We were concerned about him not being good enough so we kept saying, we'll practice with him and when he's older he can play. The problem is it never happened and now he's 8 years old and the kids his age have so much more experience playing that we feel like we missed our opportunity for him to start when it was new to everyone. I guess my point is, don't over think how the autism will effect him in different activities. Just think of him as a kid and see what he can do. He will surprise you!

Good luck,
K.

6 moms found this helpful

I have over 10 years in the field of Developmental Disabilities and am very opinionated about it. Please take what I say as just my opinion.

I have worked in institutions called ICF-MR's, Intermediate Care Facility for the Mentally Retarded, in group homes, shared living, supported living, independant homes, individuals homes, and just about any other living situation you can imagine.

I have seen a grown man walk to work clear across a small town and manage the grocery section of a small mom and pop grocery store, he was responsible for stocking, cleaning, letting the owners know what was getting low, and then walk himself home to the group home. He got a $10 allowance every week from his parents who managed the son's money, they said he could only have the small allowance sine "He's retarded, you know...he can't understand how money works".

I have seen parents who embraced the disability and made their kids work hard to overcome limitations too. One of my friends changed her whole life around and started a whole new career as a case manager in the field and claims her son's Downs is not that big of a deal.

I believe it is the parent who makes or breaks the adult situation. My SIL will never let her daughter live independently. The daughter works in a catering department of a college and tried living in an apartment one time and it didn't work out. So, my 40+ neice will always live at home, I wonder what will happen when my SIL dies, the daughter is totally dependent and won't be able to live without supervision.

There are many situations where children with disabilites can grow up and have the best support possible. Mainstreaming them in a regular classroom is one way to get them socializing and understanding simple social rules. Taking them out in the community and allowing them to make mistakes and learn from them is okay too. Helping your child to understand how to act and how to make good choices is hard, even with kids who don't have obvious disabilites.

Just be patient. Call your state offices for social services and ask for business listing of people who work with Developmental Disabilites and see about getting some support information. There are tons of classes parents can take and whole businesses that supply staff and assistance to families with children who have needs.

To answer short and to the point, yes, I belive if a child is taught to be independant they can live as independent as possible.

5 moms found this helpful

When my son was three, he was dianosed with PDD-NOS which is on the spectrum of Autism. He is now seven, reading at a fourth grade reading level, above grade level in math, very social, has a creative mind, and engages in creative play. Yes, he is still emotionally immature.

At two and half, his language was really delayed and he was dianosed with Apraxia of speech. He received four hours of speech and OT a week and I sent him to preschool since he was two. Did I think he would be where he is now back then? NO! I wondered if he would ever speak in sentences.

I think the label of autism is used too much and that the spectrum is way too wide. My purpose of getting him dianosed was to increase his therapy. But upon getting the dianosis, they could offer me nothing in the way of therapy.

I don't know your son's specific situation but DO NOT let a label close doors for your son. Make sure that you provide him with plenty of therapy, constantly advocate for him, and have high expectations.

Good luck.....

5 moms found this helpful

I have a couple of male friends and one female who are high-functioning autistics. They are bright, hold good jobs, and are socially a bit unique, but interesting, and have friends. I doubt that you have to fear for the future of your son.

4 moms found this helpful

I have worked with Autistic children in an elementary school setting for the last 5 years. I also have a relative with Aspergers. I know the diagnosis is frightening but there is help out there.

I believe early intervention makes a huge difference. Once your son is 3, contact your local school district and request an evaluation. You will be amazed the services that are available. Partner with your son's teachers and work on a plan to ensure his success in school.

Often people on the spectrum tend to gravitate towards careers in research, technology, engineering, etc. They are usually very intelligent and like to focus in depth on their particular interests. You see this intense focus in little boys often with trains, dinosaurs, bridges, etc.

Your son will grow up and have an amazing life. He is fortunate to have caring concerned parents, an early diagnosis and to be born in a time when society is very focused on helping these children succeed.

I wish you all the best.

4 moms found this helpful

hi, i just wanted to point out that here in nassau, the kids are eligible for early intervention before 3. after 3 it falls under the domain of the school district, and the services are slightly less. i would assume ny gets at least the same level of service for early intervention, you should call asap and get him whatever services you can, the sooner the better. there is nothing like one on one, and that is what he will get now. also, for your own peace of mind, i strongly recommend you see the movie "temple grandin", its a true story and besides being an amazing multiple award winning movie, the perspective of temples mom was portrayed in depth and amazingly well. temple is an independent, amazing adult with autism, you should check out her story after seeing the movie. its on hbo now. best of luck to you.

4 moms found this helpful

Yes, he has every chance to be independent. My experience so far has been only with children but I've read about high functioning autism adults being married, raising children, having a responsible career. I saw a reality program on the health channel about a family who was about to deliver their second child. The first child, a boy, was acting out in ways that reminded them of his father who has Asperger's. The son was diagnosed with ASD and the family was receiving professional help. If the program had not said that the father has Asperger's I would not have known that he does.

High functioning means just that. He functions on a high level. I have a cousin with schizophrenia. He's high functioning. He's worked full time for the US postal service for over 30 years and has received awards for perfect attendance many of those years. He has been hospitalized several times, most happened before he started at the post office. He's married and has a grown son. Living with him is a challenge because of his illness. Yet he is much more successful in many ways than many mentally healthy people.

Same with ASD. Because of having ASD your son and the people closest to him will have to make adjustments but he will appear to be a typical boy much of the time. Because he's high functioning most people may not even realize that he's even different than a typical boy. It's important that you know so that you can provide the help he needs to adjust to his world as he relates to it.

4 moms found this helpful

YES! There are so many kids with this diagnosis now. I really think it is genetic because it does tend to run in families. Do you have anyone in yours or extended family with ADHD/ADD or someone really smart but socially awkward? ADHD is not the same but it is related. I think that since this is a newer diagnosis, that there are many functioning adults in this world that have it and don't know it. Also, I worked with kids with asperger's and autism. Kids with autism (not aspergers or high functioning) really need a lot of intensive therapy in their formative years to be independent as adults. But lots of higher functioning autism spectrum kids in my opinion are people that the older generation labeled socially retarded, brainiac nerds. The reason why they were socially retarded was because no one explained to them social rules in a way they could understand, and because they were never dxed. Just a theory of mine. Tracy C seems to have the same theory. Rumor has it that Bill Gates has high functioning autism.

3 moms found this helpful

Absolutely! Look around--we most likely all know someone who wasn't diagnosed years ago who has grown into an independent adult! Our neighbors, coworkers, etc.
The GOOD new for you is there is a TON of help and services available to your child and embracing that now and taking every advantage and option out there will massively benefit your son.
My son has a buddy who was diagnosed as PPD-NOS when he was about 3 and with early intervention/therapies you would never know there ever was an issue. He's now in 2nd grade and the school is unaware that he ever had a diagnosis. He's a happy, healthy, active straight A student. The best thing you could do is embrace the diagnosis and start asking "what's next & how can we help?" Best of luck!

1 mom found this helpful

Our 4 y/o has PDD-NOS and he is considered high functioning, however, he has a delay in speech and he stims occasionally. Being in an excellent school here in Manhattan, we have seen our only child grow in so many ways. We are very confident that he will be an independent high schooler, colleger and adult.
Karate has helped him and so had play dates. We have a neighbor whose 2 children (girl/boy) both had PDD-NOS. The little girl is 5 now and you would NEVER know that she had PDD-NOS. The little boy, who is my son's playmate has a speech delay and stims, like my son but we've seen both boys improve.
Some days I ask my self "why?" But my husband and I believe that God knew that we could do it. Our son is happy and loved. He talks to people and is very friendly. Stay strong and keep him involved in activities.

1 mom found this helpful

There are a lot of professionals that are rethinking the whole autism spectrum thing. It seems "they" need to put a label on any child that varies from the norm. Then "they" can give the child "services" to turn said child into a normal (whatever that is) one. This makes it real easy for the educators who can treat ALL kids the same and expect them to ALL learn at the same pace and the same things.
If YOU think your son is totally fine then he probably is. If he doesnt talk as much as another or is a little shy or likes to count cracks in the sidewalk. SO WHAT!!! Your "high functioning" son will be fine with lots of love and very little labeling.

My 8 year old daughter has high functioning Autism. I think with therapies and supports it is possible that your child can be independent. Every kids with Autism is different so no one can really answer this. Most states do not offer much support and therapy for people with Autism so do a lot of research and ask your insurance company what they cover. Also join a local Autism support group and get to know other families.

It's a tough road I'm not going to lie. Good luck!

Thank you so much for asking this question. We are in the same boat, our son will be 3 next month and has been receiving therapy for 6 months now. We've seen an improvement in his language and other skills but I still always wonder if he will be an independent, happy adult. So many people have told us that kids just like our son that receive therapy early on and go to a special pre-school are often sent on to a general education kidergarden and no one ever knows that they were in special ed or had a diagnosis early on. Even the develomental pediatrician we saw said that this is the case in for many kids.

So we are hoping that our son will also be one of those kids. Do as much as you can with therapy and look into a special pre-school in your area.

Best of luck,
R.

I'm recently reading a lot about this topic and I think your son has a very good chance at being independent. Check out all the possible assistance available in your area, like Birth to Three and find out if you can get a tutor or behavior assistance. When he's in school you can request an IEP or 504 plan to help him succeed, especially if he's already in Birth to Three. Many people have found success in changing their child's diet if behavior is an issue. Gluten especially seems to affect behavior in some children. Read Temple Grandin's books. She was diagnosed with autism and is now a well-known animal behaviorist. Turns out her personality and autism help her understand animal's points of view, such as what scares them and what motivates them! There is also a first-person story called Born on a Blue Day about a British man diagnosed with autism and how he coped. One more book: The Curious Incident of the Dog at Midnight, written by a teacher of autistic students. These books give you a perspective of how some autistic people perceive the world and what helped them to become successful.

Could you give a little more information about the signs he saw that led to that diagnosis? There needs to be more than just speech delay to get an ASD diagnosis.

That said, many HFA kids do great in the world. And many kids are labeled ASD that don't actually have it, so that is important to keep in mind.

he'll do great and be independent. a really good thing about knowing about it early is that he can learn coping mechanisms for stress and things that set him off - adults with autism undiagnosed can have some serious mental health issues - so get the help you can for him now and he will do great.