to be diagnosed or not to be?

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I have a son who is four, we had terrible trouble getting him into school, he was the youngest, had literally just turned four and displays many of the traits of a child with aspergers. He was so socially anxious, hysterical really, I took him to the doctors and told them about the problems we were having, like couldn't stand the shirt fabric on his skin, change in routine etc and they agreed for him to be reviewed, I was at the time concered we might get in trouble as well because we just couldn't get him to go. My little boy is much happier now and actullay loves the routine, he has a few problems, the language delay and he doesnt seem to get the other kids, but he is ok and im begining to wonder now whether I want him to be diagnosed. I am almost sure he has aspergers or high functioning autism, I studied pyschology myself and I am aware of lots of the problems, particuarly with school, but, Im ok and have done well in my career. I don't want my son to be labelled or for it to stop him getting a certain job when he is older. As long as we are aware of his difficulties, surely thats the most important thing? Any grown up aspies opinions much appreciated.

Unless there is a specific need or some very good reason for doing otherwise, I would keep him out of "the system" as much as possible.

Did taking him to the doctors have anything to do with that?

Either way, maybe there is a doctor who will monitor him and possibly help you a bit, if necessary, without making an actual diagnosis until well after you are quite sure to do so would actually be best for your son.

No, your awareness is not the most important thing (though it probably is for the moment) - at some point, it will be his understanding and awareness of his handicap that will matter most. From your description, I have the impression that he is probably never going to be as high functioning as you are and may need access to social services and assistance at some time in his life - a formal diagnosis will be invaluable in times like that.

As for social stigma, simply don't mention it to anyone who doesn't need to know. However, don't ever be naive enough to believe that as long as you don't ever use the terms Asperger or Autism aloud, nobody will know he's different. We don't get bullied because we have a label - we get bullied because we have a handicap, whether its ever named aloud or not.

Then there's the issue of employment in the supposed future. Not living in he UK I really don't know what kinds of regulations exist regarding disclosure, but again, unless there's a publicly available chart with AUTISM stamped across in big red letters, no one needs to know unless they need to know. It might actually be better going in to a job mention it and play it down, so if there's a discrimination issue later, at least the employer can't say "We had no idea there was a disability involved."

Really though, his Autism and special interests are more likely to limit his employment options than whether anyone knows he has a condition they don't understand and have never heard of.

It does seem as though I've seen posts here about military careers and security clearances that have led me to believe most western military establishments don't consider it a problem and if they aren't concerned about it, I can't imagine why a corporate employer would be (unless it affects their insurance rates or bottom line). If the condition isn't likely to cause you to have to take lots of time off, or run up medical bills, I don't see why it should matter to an employer at the interview stage. Just being an Aspie on a day to day basis is what will get you fired.



Now let's hear from the Naybob chorus, who feel their disability is a humiliatiing malformation and should never be spoken of in public at any cost...

What Willard said.

Also, your son is going to be labeled either way whether you like it or not, may as well give him a label that's extremely truthful. Having Autism is not the end of the world.

As someone who is not formally diagnosed, I urge you to pursue a formal diagnosis. A formal diagnosis will allow him to receive assistance in his life.

Navigating this crazy world by ourselves is mentally and physically exhausting. Assistance will likely allow him to gain employment when he is older. If a job is not friendly towards Aspies, it will be so regardless of whether the formal diagnosis is applied or not.

I agree with what Willard and WhittenKitten said.

Also, though, I think it depends a bit on services available and how severe his problems are. If you feel as though you can get him what he needs without a diagnosis, teach him things to make up for some of his deficits, maybe it's not necessary. But if he's having problems in school and needs help, then he needs an accurate diagnosis.
I'm not sure about the merits of an unofficial diagnosis. That wouldn't carry the label or the accommodations, but a repeated theme among undiagnosed aspies is inaccurate diagnosis, getting labeled all kinds of other things.. So an unofficial diagnosis might be a bit of an asset in that way.

If you're concerned about a label, it might not be serious enough to need one. Like Willard said.. the bullying, isolation, status as a pariah.. those all come even without a diagnosis.

I see Asperger's as an explanation, not a label. It is an explanation of why certain things are harder for me. I got the diagnosis as an adult and it was definitely the right decision for me.

In my opinion eventually he will realize that there is something different about him and knowing he has AS or is on the spectrum will make it easier.

I think it's important to be diagnosed because you never know what problems you'll come up against in life and sometimes people need to know that you have AS so that they can have any idea of where you're coming from. And moreover, if you don't get your kid diagnosed they'll wonder why you never told them that they should make eye-contact when they speak to people, and they'll wonder why they're not like everyone else because, believe me, other people won't hesitate to tell them. Plus, now that there's so much more awareness of AS, the likelihood is that someone will be kind enough to point it out to them. You can't hide it...

My son was diagnosed with Asperger's when he was 6. He was having all kinds of problems coping in school, despite the fact that he could read at a 3rd grade level before ever setting foot in a school. Having a diagnosis of an autistic spectrum disorder made him legally eligible for what we call an IEP (individualized education plan.) I'm in the U.S. but other countries have similar things.

In fact, early on, there was no appropriate educational setting for him. The regular classroom was too "busy" sometimes, but the special day class was filled with kids who had completely different needs than him. But since the school district was legally required to provide a "Free Appropriate Public Education" to him, they had to create something. (But you have to know the laws where you are at, and advocate for your kid.) They created a class especially for kids with similar needs, taught by someone trained on AS. My son spent most of each day in the regular classroom, but went there for an hour each day. Now, in middle school, he's in a similar class for one period, or whenever he's overwhelmed and needs a quiet, "safe" place. In P.E. they were doing square dancing, and he had major sensory issues with the music, and had a lot of anxiety about the whole thing. He was allowed to spend that period in the special classroom, and do some of his homework (and draw a picture related to his special interest) instead. Without a diagnosis, he wouldn't have that option, and would have a lot more stress because of it.

At age 4, it's hard to know what kind of needs your son will have. Kids with AS often end up looking like they aren't trying hard enough, or like they are "making bad choices." Without a diagnosis, he may end up having teachers lecture him endlessly about how bright he is if he would only "choose" to apply himself, or "choose" to work well with others, or whatever his issues are. That happened to my son one year, despite the IEP. This teacher saw that some days he could be a model student, so on rough days, when he was having trouble focusing and coping, she assumed that he was "making bad choices", and was making him sit on a bench every recess, and saying hurtful things to him. His self-esteem plummeted, and he got sadder and more anxious every day. I didn't know what was going on for months, because he didn't think to tell me. As soon as I found out, I had him moved out of that class. But without a diagnosis, he'd be getting that all the time, and I'd have very little recourse.

Anyway, that's a little of our experience. I think getting him diagnosed is an important first step.

... and that is why I would not be clamoring for a diagnosis just yet. If one is found to be needed soon for some reason, then by all means see about getting one. But in the meantime, I would just let people know only on a need-to-know basis while slowly and carefully helping you son come to an able-to-understand awareness of himself ... and then later, if possible, let him be in on the decision about a formal diagnosis. As a recently-self-diagnosed senior, I do not suggest these things from any amount of personal experience, but instead simply based on the many, many things I have read here on WP from people who either were or were not formally diagnosed as children. But of course, your decision will be based upon what you believe best for your son!

I was diagnosed at 23, and you have no idea how much I would have liked to be diagnosed at 4. It would have helped me and my parents understand so many things. You can keep the diagnosis for yourself and your child, just so you and later in life, he understands what is going on. I currently work and have a bachelor degree and a masters degree and i have never told any teacher or other superior about my Asperger, but I feel so much better knowing what I have and how it works.

That is so true. I would have made a lot of different decisions when I was younger if I had known. AS affects a lot of things including what subjects I'm good at and what jobs I can do. Also it may be worth bearing in mind that the reason why I ended up finding out about AS in the first place was because my AS affects both my mental and also physical health. My Mum knew that there was something different about me when I was little because it was really obvious from my behaviour. I had problems throughout school, was totally off the rails as a teenager / young adult some of which I think might have been avoidable had I had some help at a younger age. Truthfully, I think that not to get your kid diagnosed denies them the best chance in life

I agree with most people here that it would be best for your son to have him diagnosed. I am also a psychologist myself, I'm 33 and got diagnosed with Asperger's only this year, after I went through a very difficult period in my life, suffering from psychosis and depression as a reaction to too much stress. If I would have known about my Asperger's earlier in my life, this might have been prevented. Having a diagnosis of High Functioning Autism or Asperger's Syndrome can give your son access to the help he may need, now and later in his life. I don't think having a diagnosis could stand in his way, I think it can only be helpful. I worked as a PhD student, doing scientific research at a university, in the Netherlands, and I will finish my PhD. I explained about my Asperger's to my fellow PhD colleagues and my supervisor and they understand, and I think explaining it helped them to better understand me.

Good luck for you and your son.

Lee,

If you had the chance to start your life over again from age 4, get the help you needed 55 years ago, and not have endured some very painful results of being misunderstood, is it possible that your life could have been better? Not if you think it would have been, but is it possible?

awkwardannie,

Every person on the spectrum is unique. Your son may need services you didn't. He may have a harder time than you experienced growing up. If he has a speech delay, something is up. It doesn't sound like anyone knows what that something is yet. I think he deserves some testing to find out if he needs any type of label or special assistance. My personal suggestion is to not avoid finding out if he has special needs because you are unsure of the impact an unknown label will have.

Certainly, and it appears the child mentioned in this thread now has that very opportunity. Here is what his mother has said:



My situation as a child was much, much different.

I'm glad I got diagnosed as a kid.
Willard is right, you never need to tell anybody if you don't need to, and I never used to. None of my peers knew about it all through school. But my diagnosis has been helping me to get a job in these difficult times. And if he has problems later but can't get diagnosed because he's learned to appear normal, you might wish you had done it now.