Just a little update...

That was my first thought as I read your post.

WD, I don't know your back story, so I hope you don’t mind if I comment on your post (I have years of experience in the mental health field). If I understand correctly, you were originally diagnosed with autism, and now they're saying you were either originally misdiagnosed, or the autism has "morphed" into schizoaffective disorder (I wasn’t quite clear which).

Essentially (and this is really oversimplified) schizoaffective disorder is very similar to schizophrenia in terms of symptoms, except that during part of an illness episode there is a period of distinct major mood symptoms (i.e. a bout of major depression, mania, or a mix of both), as well as at least 2 weeks of psychotic symptoms without the mood symptoms. It’s more complex than that, but that’s the essence of the disorder. (In my experience, it’s one of the most difficult disorders to accurately diagnose because there are so many subtle criteria that must be met; mostly pertaining to timing of symptoms.)

It's possible for a child with autism (or rather, an autistic spectrum disorder) to develop schizophrenia in childhood or adulthood, and perhaps that is what they’re saying has happened in your case (although “morphed” isn’t likely an appropriate term; it’s not as if the autism goes away – the schizophrenia or schizoaffective disorder becomes an additional diagnosis). But overall, autistic spectrum disorders are very different from psychotic disorders – there may be some minor overlaps, such as stereotyped movements (e.g. rocking or hand flapping) and other odd behavior.

Misdiagnoses happen quite often, especially if whoever is evaluating you is inexperienced or hasn’t done a thorough evaluation. My biggest concern for you is that they've likely put you on an antipsychotic medication (and possibly an antidepressant or a mood stabilizer as well, depending on your current symptoms and history). Antipsychotics are potent medications with a lot of very serious potential, and sometimes permanent, side effects. I'd hate to see you take them if you don't absolutely need them (i.e. if you’ve been misdiagnosed).

It sounds like you’ve looked at the criteria for schizoaffective disorder and don’t feel it fits (that’s what’s concerning here, IMO). In that case, I highly recommend getting a second or third opinion from a very experienced psychiatrist or psychologist.

In order to be diagnosed, the primary symptoms of schizophrenia must have been present at some point, and those are pretty hard to miss. Wendy (I assume that’s your wife) would most likely have noticed if you were having delusions or hallucinations, or if your speech was significantly disorganized (that can manifest in a few different ways) at times.

Doctors certainly aren’t infallible. I hope for your sake this is a misdiagnosis (I've seen that happen many times). If not, then I hope the medication is helpful and the side effects minimal.

I respect your decision, WD, although I wasn't really suggesting "arguing" per se. I've always been a huge advocate for patients' rights, and it saddens me when someone is misdiagnosed, as the ramifications can be quite serious.

For what it's worth, if I had made the diagnosis, and you and your wife were questioning it, I would want you to speak up. That often leads to a productive discussion. And if you chose to get another opinion, I would understand and respect that you want to be certain, especially regarding such a serious diagnosis.

Hate to see you go, Will, but I think I understand even if I don't know the reason(s) for it.

If you do leave, take care.

Get a second opinion in another city.

I also had late language acquisition, withdrawing from standard human interaction, starting at age two. They attach a stigma to it, starting with the word "disorder" rather than something like "condition." Apart from the standard adjustments one has to make, the stigma is a problem in and of itself created by neurotypicals.

Quite a bit of research showing diet can be a factor - especially eliminating gluten can be
somewhat to very helpful. An employee of mine has a younger sister with Autism (I don't
know the exact terminology of diagnosis and it sounds very acute, and she was 2 or 3 years
old when she was diagnosed).

Her family took about six years to wean her completely off medication and she is now
15 years old. Eliminating gluten is a large part of what they did. My employee estimates
that her sister will be able to live on her own - or more independently - at perhaps age 25.

I'd suggest working with a nutritionist and MD, DO, or naturopathic doc who are experienced
with your situation. I suspect that eliminating all grains/dairy and going organic may be a path
to some or a lot of relief. Certainly explore the food/drug allergy connection as well.

Dan

You don't have to go away, LOL. That's what most of those "doctors" and "experts" do -- add extra layers of complication.

That's the funny thing, there is more variety in autism spectrum than among neurotypicals. It is cool and unique and actually can't be generalized. That is undoubtedly what confused the doctors in Saskatoon. It didn't fit into their rigid diagnostic criteria (nor should it):
The connections in autistic brains are idiosyncratic and individualized | Ars Technica

Yeah, you can't rate your own thread . . . so I rated it for you.


It takes more than one person rating a thread for it to show though. I don't know how many votes it takes to hit that magical number.