Help for Adults with Asperger's

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Hello everyone. I have a 26 year old son who I believe may have Asperger's. He is against getting a formal diagnosis because he can't see how it would help. In fact he fears that even seeing a therapist will result in him obsessing about his problems. He is very depressed and as of late has had OCD that is off the charts. He does not have a job at this time and has been living back at home for the past year after living away from home for three years before that. We subsidized his rent & expenses for a portion of that time. I don't see him getting a job until he has addressed some of these symptoms. He asked that I contact the forum and get some feedback on the advantages of getting diagnosed. I am also looking for some kind of assistance for him because we are having a hard time paying for his general medical care, much less therapy.

He's partially right - getting a diagnosis usually does cause an Aspergian to begin obsessing - on finding out everything they possibly can about AS, what it means and how it really affects them. For those of us who lived with it for many decades before we ever knew it had a name, it is liberating and cathartic to learn why we've felt so alienated and outcast all our lives.

When you've gone forty or fifty years being told by parents, educators and employers that you're lazy, unmotivated, obsessive, clumsy, aloof, annoying, insubordinate, stubborn, out-of-step and just plain weird (to name a few of things I've been called), it is such a vindication to finally be able to point at proof that all those years you tried to tell everyone around you "I just can't do things the way you do them" - you were right, you actually can't. And you're not alone.

But the more you come to understand the real effects of AS as objective, cause-and-effect handicaps, the better you understand yourself and why these things are limiting in the ways that they are. Now that doesn't make them go away - Autism is a hardwired variation in the neurological template that forms your brain in utero - its the way your head is made and there's no cure for that. But understanding just what functions in the brain are affected and how, makes it easier to accept the limitations you have and somewhat lessens the frustration you experience when faced with a situation that requires a workaround approach - a 'coping mechanism'.

One of those limitations is known as Executive Dysfunction - the brain's Executive Function deals with planning and performing complex series' of actions. The maturation of this part of the Aspergian brain becomes ret*d somewhere around or shortly after adolescence, meaning that in some respects, although our intellectual capacity may continue to grow unabated, the part of the brain that should help us become responsible grownups never develops as fully as it should, so functioning in the workplace, managing and organizing operations and planning for the long-term future can be at the very least tremendously challenging and at worst, a nearly insurmountable obstacle.

This is probably the most compelling reason for seeking formal diagnosis - at some point in the life of a person with Autism, it is quite possible that they may find themselves in need of assistance, or to take advantage of public Disability programs (I fumbled my way through a 30+ year career before I hit the wall), and to be eligible for that, one must have an official diagnosis . As it can take upwards of a year for the wheels of bureaucracy to process a Disability claim, its best to start early and get the diagnostic part of the process out of the way, even if the paperwork just sits in a file for years before you need it.

But there are many variants and permutations of the symptoms associated with AS, a lot of them covered by the umbrella diagnosis PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), meaning that you have some Autistic traits, but not enough to be considered the full 'Syndrome' suite. I think you can pretty much tell by studying the criteria in the DSM - if you feel like someone has been reading your diary, you probably qualify. If not - if only a few apply and lots of others are either way off, or barely fit, breathe a sigh of relief, you've dodged a bullet. Even a perfectly neurotypical individual can have a trait or three that seem slightly Autistic.

I feel like a dang alien from Phaelon when I
try to get on in "reality".

Everyone else likes hamburgers and pizza and
I like squid and kimchi.

I would rather play with water squirt bottles
with my little frends across the street
and make mud butts and mudpoops than
date someone or do rehspis or be married
with someone or "chase girls" in pubs.

I prefer rainy wet dark days over
snyunsnyiney dry hot days.

I hate beer I'd rather have apple juice in
my sipcup.

I'm a boy who loves his kittypuss and wears
his Pooh and Tigger overalls.

When someone is mean to me I hock loogies
at them and throw mudballs at them and
kick the dise of the car and stamp and scream
(I don't drive anymore I quit) I even threw a
spoon at this buttface once, and I can't control it,
the control knob isn't there, I tride 100000000000 times
to flick this supposed control switch and 100000000000
times it did not work.

***********************************
************************************** I wonder why?

I think if a person gets an official diagnosis at an early age, it is overall beneficial. The person maybe eligible for some benefits and accommodations. However, the older a person is, the less beneficial an official diagnosis becomes. When I was first diagnosed, autism was not very well known, and an institution was the only option given by experts. Because of such, my mom never disclosed my autism to schools, etc. in order to give me a chance. Now that autism is more known, people who get diagnosis at an early age do get accommodations and aid in school. However, that ends in adulthood. In the United States, in most places, there are no services for autistic adults. Those who are very low functioning may be eligible for government financial assistance, but that is basically it.

For those who are (officially) diagnosed or re-diagnosed as adults, we lose our ability to buy private health insurance in most states. In some states such as Maryland, the D.M.V. requires autism to be disclosed on drivers license applications. Autism can be used to deny a person their right to drive. I see no benefit whatsoever for a higher functioning adult to receive an official diagnosis. This doesn't mean that a person cannot seek a doctor's opinion, but an official, on the record diagnosis hurt rather than helps in most cases.

My advice is to consult with the therapist and see if the findings can be kept as unofficial. Unfortunately, this will probably not be an option if insurance is picking up the tab. Having a diagnosis, whether official or unofficial, will help your son figure out why he does not fit in, and in that sense, it is a good thing. However, in most cases unless your son is applying for benefits that will likely be granted with an official diagnosis, it is best to keep such diagnosis unofficial until such a time services for autistic adults become available.

Thank you for your thoughtful reply, Willard. I am going to ask my son to read your post. Hopefully this type of information will help him
plan his next step.

The idea that a formal diagnosis could end up being more harmful than helpful is something to be considered. I was thinking that he could get assistance paying for some of his general health care needs and some therapy if he chooses. He has no health insurance at this time. I guess I should check to see what if anything Texas has to offer. Thanks to all that have replied to my post. I look forward to sharing this information with my son.

First, someone with AS may not be eligible for SSDI until they're older. I filed at age 49 and the attorney told me flat out, I probably would be turned down the first time, but by the time he filed the appeal, I'd have turned 50, which put me in a different classification, as employers are more hesitant to hire workers over that age for fear it will jack up their health insurance rates.

An Autistic might qualify for Disability at an earlier age, but probably only if a therapist made a very good case for it. Uncle Sam figures if you're young and able-bodied, you can find a job.

As for not being able to buy health insurance, that really doesn't make sense, since most insurance companies don't cover AS/HFA anyway. It isn't a physical ailment so it shouldn't affect any other claims. Of course, if you qualify for SSDI, you'll also qualify for Medicare, so you'll automatically have Health Coverage.

I understand where you are coming from in this case, and I respect your opinion. In my state (Florida), Aspergers and or autism is a disqualifying condition. I know because for the longest time, that was my only pre-existing condition, and it was the reason mentioned in each and every rejection letter. Since the "Dear Leader" is in the process of demanding each citizen buy health insurance, maybe I will be cover in the future. However, I can only imagine what the cost of the policy will be. I also find that I am ineligible for any kind of government benefit for one reason or another, and based upon my previous life experience, I do not see any help for paying for mandatory health insurance being given me by the government. Willard, I'm glad you live in an area where you can obtain some assistance. I think it should be available to those who need it, but in my area, that is not the case.

Hello Bill and thanks for your very detailed and helpful post (which I have abbreviated in the quote above).

I go for 'evaluation' on August 2nd and the two reasons that you give above for seeking a diagnosis (late in life) are precisely why I have arranged my appointment.

Like you, reading DSM was like reading my diary..............the only uncertainty for me is what other 'conditions' are diagnosed

I wish you luck on your evaluation, and I hope that you live in an area where it won't negatively affect your life. Understanding your life and struggles is a very good reason as to why you would want to seek diagnosis.

Thank you Cyberscan.

I see the impact being wholly positive for the reasons that you mention.

Im wondering if you are thinking you son can be diagnosed and then "cured" by therapy. There is no cure for Asperger's and thou therapy can help teach one to deal with things a little better, I dont think it can ever fix the issues us Adults with it have.

I recently got offically diagnosed at 39 yrs old. I'd done okay in my life up till 2 years ago when things in my life started to go very wrong. Having Asperger's my coping ability is less than a normal persons is so i then started to have "explosions" which i hadnt had since a child. Due to my Asperger's I got into trouble with the law due to lack of self control.

So in my case.. people finally knowing what my real issue is has helped. (they'd blamed it on a different mental health issue and then couldnt understand when therapy for that other issue wasnt working for me).

Before people didnt understand me.., they'd comment I seemed really smart (my IQ level is one point below the average IQ for professors) and that they just couldnt understand why my thinking about some things was very child like and I'd end up doing things in a way which typical people dont do.

So being able to say "Ive got Asperger's" has actually diffused some situations for me.. when another has become angry at me due to my differences.

Where i live there is no therapy available for Asperger's adults (only children) and in my country.. it dont affect my health insurance.

Good luck to you Blindspot149 when you go for your evaluation. I can see where it would be liberating and cathartic to have that understanding. I want that for my son as well.

As a child he was diagnosed with dyslexia and it made him feel better to know. He could see his problems were not because he was stupid but because his brain worked a little differently and he needed to approach learning to read in a different way. I see having Asperger's much the same way. Maybe he could learn techniques to help him get along better in an NT world. But most of all I wish he could accept himself more.

All the medical insurance discussion is tricky; in my experience, insurance companies and life insurance companies will use pretty much anything to either bump an applicant into a higher rate category, or reject them altogether. If that wasn't true, we wouldn't have had such desperate need for health reform. So, yes, despite denying coverage for the condition, I totally believe it could be used to reject an applicant in the first place.

My mantra on this board has been to ask what a diagnosis is going to get for someone. You can be AS, and know you are AS, without having a doctor put it on a form. With my son, the school decided he was AS and approved an IEP on that basis, leaving me to feel that I didn't need to put it in my son's medical file. We've never pursued a medical diagnosis, because I know it fits, and we're getting the services my son needs most. If your son sees himself on these boards, in the written descriptions, and through the on-line tests, he will have the self-knowledge of AS, and that will be a huge first step. If he is going to need benefits and services, then he may need more.

But, honestly, it sounds to me like the depression and the OCD are the first road blocks, and these are commonly co-morbid to AS, but not part of it. There are valid medical treatments for both, and pursuing those treatments could help him get back on his feet. In our area there are non-profit community health and mental health clinics that will help those without insurance deal with things like this, and looking for that sort of assistance could make a large difference. Once these layers are under control, you can get a better sense of what AS traits (like executive dysfunction) are standing in the way of independence, and look for how to deal with those.