I Feel MisDiagnosed

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Hello all,

I am struggling with my new dx. I never had social issues. In fact the teacher put shy kids next to me. At 14, something terrible happened to me, and that is when I became "autistic," and it was very very rapid and very bad. No one knows what happened. I do not know what happened, but in one month, I was totally disabled and could not even eat. And I never ever recovered. Now I am old.

Dr say it was there, i just did not notice it. I can't buy that. I had no symptoms except as a baby rocked. Seriously, I cannot understand how that makes me autistic.

MRI is clear. Even DTI MRI is clear. Neuro cog testing all OK except visual spatial, low.

I have no idea what to think. Can anyone shed light? I am very sad and confused and do not think I am Aspie. I love Aspies and know several, but I make eye contact, I love people, I am social.........and my Aspies friends say to me, "You do NOT have aspie...."

How does it feel to not fit in with NTs and not fit in with Aspies and not fit in with anyone? I am about to make a noose, I am not kidding!! !

If you have a rare disorder that affects less than 10,000 people you can expect to have it misdiagnosed.

I am confused, why did they say you were autistic? Can you go back and discuss the results with them and tell them why you question the diagnoses and get their feedback for it?

Does this help describe what you're saying. It tends to display around the time autism does (3 years old) Though, There isn't any materials on it after. The founders of Autism Speaks, had a Grand Child who was misdiagnosed with autism. Rather then CDD. Which helps contribute to some of the whole cure autism viewpoint.

The only type of regression other than dementia is Autistic regression, which is the only one that happens in the early stages of your life, (Toddler). Which, it would be a much smaller stretch to say that can affect people up to adulthood, than to say dementia can. It was actually known as dementia before.

Wow. Piepulp. Yes. That is what happened! But I was 14!! It was very fast and it was not like I just stopped deveoploing. No, I went back to about 10 years old and never really recovered. I lost a lot of skills and never even physically picked up. Then I had all the symptoms like sensory and repetative stuff, etc. .....but then I got social again, but never grew up. Why??
I don't know what happened! But that is what happened, but I was older.............I am so frustrated.

The most terrifying childhood condition you’ve never heard of Childhood disintegrative disorder, a rare and severe condition, rapidly melts away a child’s abilities. A new theory proposes that this little-known condition turns back the developmental clock.

I learned something new with this thread. I have always posted with the false belief that Autistic Regression clinically is something that happens in the toddler years. It has always been considered part of the Autism Spectrum as it turns out. While it is defined as something that happens up to age 10 middle age adults have described something similar happining to them informally calling it "Autistic burnout". At age 14 a lot is going on in ones life new school, puberty, and just more demands social or otherwise so it seems that could trigger burnout/regression.

Damm shame the DSM-5 subsuming CDD into the larger ASD diagnosis has killed off what little research was going on into this condition.

Pleasure to be of service. As to Why?? I can't really awnser that question. much like Why are we here and does god exist. You simply can't. Atleast not as of now. Why is there any disability why is there disease. One may not know. For sure.

Some people here are giving old, no longer accurate, information. CDD isn't a separate disorder. It's just a type of autism. And it's a term that is no longer used because its a part of our history that has been deemed abusive. It's part of this whole vacine damanged phenominon. Just a whole lot of mis-information about autistic kids being "stolen" or "perfectly normal" until this terror came to visit the family. We now just note that the child's autism is regressive. Autistic regression is a normal phenomenon for the kids who have it. It's a phenomenon of infants, and sometimes very young children. It does not happen to older children. And actually, at 14, your body has at least started puberty and "child" is more a mental state than a physical state. You simply can't develop autism at that late age.

Using the term "autistic regression" to describe older adults who have an increase in symptoms in adulthood is confusing. That's why its not a technical term. It's being used informally, and usually by people who aren't seeing the big picture of what that word means.

I hear that there are some people who think that CDD is a separate thing, but scientists researched this and found that no - it's not a separate thing. Most often, older children that go through this have some kind of head trauma. So, they don't call it autism, they call it Traumatic Brain Injury. Or they give it a label that fits what happened. That's really important because the treatment is different and the prognosis is different. It's simply not the same thing, even if there are similar outward signs.

I agree with the others here. It sounds like you had something very rare happen to you when you were 14 that made you look like you are autistic. But that's really not the essence of autism.

I would be investigating some rare manifestation of a virus or similar infection. For example, meningitis, Lyme disease, Rocky Mountain Fever, syphilis, etc... (I'm not saying you were sexually active at that age. I'm just saying that type of disease.) All of these can sometimes cross the blood brain barrier and cause havoc on our nervous system and our cognition.

This kind of stuff is so rare. But its less rare than a person having autism and not manifesting any symptoms until post-puberty.

So they basically got rid of a label that would describe a certain people and now they have nothing out that that fits them. ASD probably would be the best they could do.

I'm not giving inaccurate information. I simply investigating it. Plus, it isn't inaccurate in countries that don't use DSM. Also, it really isn't inaccurate, Regression is associated with two things. A. Dementia, and B. ASD. Since, ASD, is far more likely the Dementia at 14. They say it is ASD. Going by the DSM IV. CDD would be the best fit. At least as far as a Complete or Major loss of skills. I simply wasn't trying to misinform. I was trying to inform him that CDD. There is no real material specificly on it in the teen years. It's either Early on set dementia which is a huge strech since it is around 40-65. CDD, Which typically persents itself at around 3. There is no medical definition for this in the teenage years. So Most likely, it isn't that your misdiagnosis but the diagnosis

It's easy to forget that Pieplup is only 13 because he posts at such an advanced level.

I'll give a less technical version of what he said because I had the same thought. And I'll sidestep out of the disorder naming debate because I'm a sociologist and don't use disorder terms anyway.

I was thinking that sometimes when something traumatic happens it can set a person back, sometimes dramatically if one is in an important developmental stage, such as early teens. So it could have been a physical injury, or an emotional trauma, or even a horrifying mental realization that was too much for you to handle at that time.

If we assume for a moment that you ARE on the autism spectrum, that would make you prone to atypical thoughts. Some idea could have strolled past in your mind that was the scope of reinventing the wheel or making time travel possible and it short circuited you.

Even emotionally something like this could have happened. Sometimes autistic people delay emotional and social steps that neurotypical kids take pretty early. That could be something like...that your mom has thoughts in her mind that have nothing to do with you or...that your little brother used to play with his own poo. Just whatever, something that isn't a big deal to us now but you could imagine would disturb a little kid.

Imagine you never considered something like that before and then all of a sudden realized it at 14. That would be a major emotional upset and it would take you awhile to get over it. In the former, you might be horrified at your mother and in the latter you might be forever grossed out by your brother. My point is that all kinds of big things could have happened to you that we don't know and may never know.

Thanks, I want to be a Psychologist. Though to be honest, most of It I learned from reading wikipedia.

There is a father who says his child was ALREADY diagnosed with autism, but THEN regressed. He called it "autism on top of autism?" and wonders if his child has childhood disintegrative disorder. After reading this post

http://www.theautismdaddy.com/2011/06/s ... utism.html

I wonder if CDD should really be seperated from autism. Maybe the definition of autism will always be a work in progress.

If I had one piece of advice to give any young people interested in anything, it would be to read. It doesn't matter if it's a book or online. It makes all the difference.

Any particular ideas where?