Hi, my son is 20 and undiagnosed

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My son has never been officially diagnosed, but I know he has Aspergers. He is 20 years old and refuses to hear anything about the possibility of a neurological disorder.

When he was a baby and growing up, he seemed to be like everyone else. But I felt something was not quite right. He was very stubborn and obsessive to the point that he made life very difficult and he did things just a tiny bit different than other kids his age. At about the age of 3+, we decided to have him tested for disorders. He was found to be highly intelligent, but needed therapy for speech and motor skills. Autism was never mentioned. He went to therapy and he progressed very well. Growing up, he had friends, he was a good student, and he participated in activities. From the outside everything looked normal, he simply seemed shy. Although he continued to be very rigid in his habits and could be impossible at times, he was a very happy child. But this started changing at about age 12.

He began to be sadder and more withdrawn to the point of depression. It was like he became more aware, and began understanding that he was different. He refused to go to any type of therapy, but we watched him closely and made sure he knew we were there for him. After a few months, the depression subsided. Life returned to "normal" but he would continue to complain (only to me) that he was sad and complained constantly about how unhappy he was. This was his mantra for years. Let me point out that he functioned – went to school, went out with friends, had hobbies, etc

I was always looking for answers. One day I found Aspergers on the internet. Wow!! ! This looked so much like my son. Had I finally found the answer to his behavior? I found a psychiatrist that worked with Asperger children. He was now 17 and always stressed. After meeting him and talking to him, she insisted that he did not have Aspergers. She said he answered her questions and he made eye contact when he spoke. She diagnosed him with ADD and Social Anxiety Disorder and subscribed Concerta.

The pills did help him concentrate, but he was more stressed and anxious then ever, lost a lot of weight and did not sleep well. After 6 months he refused to continue taking the medication. The psychiatrist lost patience with him and said she could not help him if he refused to take the meds.

I continued researching, but all roads have led back to Aspergers.

Today, at age 20, my son suffers from constant stress and anxiety. He is a perfectionist, and sees himself as flawed. He refuses to hear anything about talking to a psychiatrist or the possibility of a neurological disorder. He continues to tell me how he has no life and doesn't care about anything, but has told me specifically, not to meddle in his life. He just wants me to be there to lean on when he needs to.

Can a neurologist test for Aspergers?

I am hoping to find some clues in this forum that will help me to help him.

Welcome to WrongPlanet

I hope you get the answers you're looking for here

Unfortunately, asperger's isn't something that shows up on a CAT scan or any other physical exam. A psychologist, however experienced or understanding, doesn't live with you and can only go on his or her own tests. More than one post on this site tells of very obvious cases of asperger's being denied because the doctor didn't see the most common features; lack of eye contact, single obsession, difficulty socializing, etc... Usually I tell people to keep looking until they find a doctor who understands Asperger's in adults in particular, but there isn't much sense if your son doesn't want any more appointments with strangers in strange offices.

My advice would be to see if you can find an adult aspie group in the area, and suggest your son attend some meetings. He wouldn't have to say a word to anyone, just sit and listen. maybe if he sees others like himself, he'll better come to terms with who he is.

Welcome to WP, and I truly hope you and your son are able to find some answers and understanding, as a lot of folks have been able to here, myself included.

My first advice, see if he's open to checking out this site, and the forums, there are so many niches, and a huge active community, that at some level, ASD or not, he might be able to relate to others here.

As an adult, a lot of us struggle with the idea of psychologist/psychiatrist intervention, and the idea of formal diagnosis. What is the true benefit of these things, and if we've survived / coped with life up to this point in our lives, what would the label actually mean and would it bring about positive or negative changes.

As others have said, the vast majority of doctors out there, even those who are ASD type specialists, know nothing of adult symptoms, and base everything off ASD's and how they present in children. An even larger majority arent' even that familiar with ASDs in children, and base their criteria for diagnosis on "Rainman" symptoms, only the most obvious.

As someone else said, the idea of joining a local aspergers group even if just to listen, or joining this online community as a lurker (read but don't post) or as an active contributer if he's comfortable, and he will find that he's not the only one with these obstacles and feelings, and different ideas from all sorts of walks of life, as to how to cope with the unique obstacles the ASD & associated communities face, in love, life, and work.

As for being undiagnosed, and unwilling to even consider any "Label" with regards to how his brain works, operates, and thinks, I'd recommend the idea that whether or not he is or isn't, is not relevant. What is, is that a lot of coping mechanisms and world views here can help him, if he takes the time to read, ask questions, or interact, he will learn a lot about himself, others, and the world we all live in.

Sorry for the long rambling post , and I hope this helps,
-Dan

Hi roselittle, welcome to WP!!

as always I recommend Tony Attwood books, there is one on the shelf next to me, I go to the book or WP and it seems to progress things easier for me.

Thank you all for your posts.

I absolutely agree that if he would just listen to others with similar problems it would do him a world of good, whether it be sitting with a group or reading a forum.

And yes, I also agree that he doesn't need the label. I just thought it would give him a direction. The problem is that he is not ready to accept the fact that he is flawed. His thinking is very rigid and unrealistic regarding his situation. He is determined to find a way to get rid of what he has so he can act and feel like everyone else.

He may need more time to mature enough to accept the facts.

I am very happy I found this site.
I will give your suggestion a try and ask him to have a look, too.

Thanks again

Welcome to Wrong Planet!

Welcome to WP.

I hope you can get a diagnosis for your son some day, as it can be very helpful in life. In the meantime, you'll hopefully find WP very useful for finding the answers you need.

Welcome!

Welkome to WrongPlanet.

The WP Kink

What's worrisome, and perhaps making it harder for your son to confront this, is your (and his?) idea that having Asperger's means you are "flawed."

It absolutely does not mean anything of the sort! It just means that you are a little different then everyone else, with different strengths and weaknesses then most "normal" people have. (My father always used to tell me that "there is no such thing as a 'normal' person. 'normal' is a made-up word.") I think you have already mentioned that your son has above average intelligence, which is but one of the many benefits that can result from having Asperger's.

A lot of Aspies struggle with depression, feelings of loneliness or self-deprecation, because they perceive that their differences makes them less then "normal" people. While at times certain Aspie traits (especially the social issues) can really trouble us and make us feel "flawed," many of us also learn that there are a lot of benefits that can come with being an aspie, and are proud or thankful for those benefits.

If your son (and you) could focus on these benefits rather then just seeing Asperger's as a "problem" to be "solved," then maybe your son would not be so resistant and closed off to exploring this. Also if he found out that he is not so alone in his feelings, he might open up.

Or maybe not. Everyone is an individual and has their own way of doing things. I didn't figure out I had Asperger's until around 20 (I'm 21 now.) I know that expecting myself to behave and act like a "normal" person (even though I always kind of knew I couldn't or wasn't) really helped me to work with and push past a lot of typical Aspie issues. I am much more comfortable being social now, however I think if I had known I had Asperger's when I was younger I never would have gotten to this point of social comfort because I would have given up long ago.

So I wouldn't push your son too hard in any direction. If he is continually resistant to you trying to diagnose him, or to accepting a self-diagnosis, then you should probably just stop trying. He wants to live his life in his own way, and you should give him love and support to do so. Maybe later on he will be less resistant. (You suggested this yourself when you said he might just need time to mature.)

The life of an undiagnosed aspie is bitterly lonely. That's all we've ever known, of course, so it doesn't feel like lonely to us. To me, that is - I've never spoken about it with anyone else. Not only do we know we're as good as everyone else, we're used to being a bit clumsy and taking a while to work things out. That's normal, isn't it? Everyone's like that.

And being outed as an autistic doesn't look a lot better. From in here, that is. If you're diagnosed early enough, there's some potential for remediation but as an adult? There's not a lot.

On the up side, of course, there's fighting for our rights in a sea of autism abhorrence. Once we're over the shock of diagnosis, which - let's be real about it - tears down the entire edifice of personality we'd painstakingly pieced together over the lifetime before. It can be a rough transition. What else is good? Our loved ones have a diagnostic label on which to hang their negative feelings about us? We may be the occasional recipient of affirmative action?

Be patient, he'll get used to the idea. Make contact, if it's at all possible, with other parents of similarly afflicted children. Keep the conversation alive without pushing, if you can. It'll start to feel like his own interest after a while.

Hi Ani

Thank you for your feedback. Flawed, different, these are just semantics. I was trying to relay his attitude to any suggestion that he may have a neurological problem. I think speaking to people like you could change his life, but he is stuck in the belief that no one is like him. I have tried to gently persuade him of the possibility that there are people out there with similar thoughts and persepectives.

But he is apparently not ready to hear that, yet. For now I have decided to leave him alone. As much as a mother can, LOL. As you said, what he needs is my love and support, and that's what I'll give him.

Hearing how you found your way gives me hope for his future!

I appreciate everyone's comments and warm welcomes.

I am so glad I found WP.

Hi, Most aspies are very good at avoiding the issues of our differences. But the best thing to start is to actually admitting to ours selves that we are not the same as everyone else. But then again, everyone is different. Even the NT's have differences.
We must all accept difference not indifference (sorry NAS for nicking your slogan).
If there is a good site to find out what differences there are, you could try searching for aspie quiz at rdos.
The site asks a lot of questions and at the end provides a graph of your abilities.
I used this site to convince my doctor into getting me tested at 48.
You cloud let your son know that it is better to know now, instead of feeling lost for 50 years and finding that you could have made minor changes to your life at a young age and it making a lot of difference to your outlook.