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SteelMaiden
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22 Feb 2015, 7:39 pm

I've noticed a lot of people here improving as they grow older.

I have regressed non-linearly. I had severe behavioural problems as a child, but by the time I was 9 years old I started calming down (I was put on a special elimination diet and I had therapy as well) and was high functioning until around 19 years old, when I started regressing.

I am 25 now and I am a moderate functioning autistic. I don't match Asperger's syndrome, I'm classic autism according to my neurologist (who is a consultant).

I feel like my capabilities are reducing by the month. To the point that my support worker suggested supported housing. I declined and now I'm applying for council funding to get daily support (I currently get support four times a week, but for three hours each time. I need more support on the basis that I cannot handle simple things that a person my age would be able to do with ease. I also have communication difficulties and cannot go to A&E or call my GP when in a crisis or when severely physically ill (I've had allergic reactions which have made me have seizures and black outs but I couldn't contact anyone or go to A&E because it made my commuication problems much worse, so I had to take a load of antihistamines and fall asleep).

I am worried I won't get council support because I have a very high IQ (too many people equate "high IQ" with "capable in life").

I have very good skills in typing things like this. People wouldn't know I'm moderate functioning by seeing my typing. But when I speak, stuttering, fumbling my words repeatedly, repeating the same words over and over again, poker face, monotone speech etc, they would realise.

Has anyone else undergone a regression? Is this a part of my autism or should I be worried about the state of my neurology?


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btbnnyr
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22 Feb 2015, 11:09 pm

It is not typical of autism for adults to have regression of going from high functioning and being able to do daily life tasks and communicate to not being able to or much reduced abilities like you describe. I would be concerned about my brain if this were happening to me. Have you gone to a neurologist? It is possible that this loss of abilities has little or nothing to do with autism. Schizophrenia is much more associated with such a reduction in functioning in teenage/adult years.


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SteelMaiden
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22 Feb 2015, 11:13 pm

My neurologist is sh*t. He always rushes me in appointments which causes me to stop thinking.

My schizophrenia (diagnosed 2005) is mild now. My psychiatrist says that I'm responding very well to treatment. All I get now is voices (that I can cope with well) and some paranoia.

And my psychotic symptoms got better, my autism got worse.


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dryope
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23 Feb 2015, 12:42 am

This is a good post on regression that's been around for a while:

"Help! I Seem to be Getting More Autistic!"
http://archive.autistics.org/library/more-autistic.html

There are many reasons why it could happen. I think as we get into our 30s we lose some executive functioning. I was just reading a couple essays about fiction writers and musicians who complained about this, so I don't think it's just an ASD thing. But I think it means that everyone gets a little slower as they age, and may not be able to complex things to the same degree as before.


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SteelMaiden
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23 Feb 2015, 12:48 am

Thanks.


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btbnnyr
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23 Feb 2015, 1:05 am

Even without psychotic symptoms, schizophrenia can cause many of the functioning problems that you have been describing. It is more likely the source of progressive, adulthood drops in funcitoning than autism. Regression in autism is a childhood phenomenon. What you describe doesn't seem like regular problems coping with adulthood demands either, if you went from high functioning from age 9 to 19 to your current level.


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nick007
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23 Feb 2015, 1:09 am

SteelMaiden wrote:
My neurologist is sh*t. He always rushes me in appointments which causes me to stop thinking.

My schizophrenia (diagnosed 2005) is mild now. My psychiatrist says that I'm responding very well to treatment. All I get now is voices (that I can cope with well) and some paranoia.

And my psychotic symptoms got better, my autism got worse.
Could your medications be causing some of the problems :?


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SteelMaiden
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23 Feb 2015, 1:14 am

True. Perhaps I am out of the primarily positive symptoms phase of schizophrenia and now I'm in a more deficit negative symptoms phase. Although my intellectual functioning has improved, almost as if in compromise for everything else.

My medications have been constant for a few years now. I am due to change to quetiapine soon but my ECG was abnormal so I've been referred to a cardiologist and have to wait for his approval before I can go on quetiapine.


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btbnnyr
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23 Feb 2015, 1:30 am

Just in general (not about SteelMaiden specificially), regression in autism is something well-documented in young children, but not at all in older children, teenagers, or adults, so it is a phenomenon that is common in early childhood, but there is little to no evidence for its eggsistence beyond early childhood. Claims of regression in teenage/adult years have been made by specific individual(s), and the concept of regression in adulthood appears to be popular in autism community, but it is based on almost nothing. In adulthood, much more realistic reasons for drops in functioning are problems meeting increased demands of adulthood, developing anxiety disorders, developing depression, other neurological problems.


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dryope
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23 Feb 2015, 3:44 am

btbnnyr wrote:
Just in general (not about SteelMaiden specificially), regression in autism is something well-documented in young children, but not at all in older children, teenagers, or adults, so it is a phenomenon that is common in early childhood, but there is little to no evidence for its eggsistence beyond early childhood. Claims of regression in teenage/adult years have been made by specific individual(s), and the concept of regression in adulthood appears to be popular in autism community, but it is based on almost nothing. In adulthood, much more realistic reasons for drops in functioning are problems meeting increased demands of adulthood, developing anxiety disorders, developing depression, other neurological problems.


btbnnyr, have you checked out the article I linked to? My guess is you're aware of it, since it's been around for a while. Anyway, I agree there is not any rigorous scientific testing on this phenomenon...but there is not a great deal of rigorous scientific testing on autistic adults at all, so absence of evidence is not surprising. While I would welcome such testing, I think the anecdotal evidence is pretty large.

Hm...there is a large community on WrongPlanet. I wonder if a survey would be useful? Without a clinical trial environment we can't do much, but we could at least get at the scope of perception of the phenomenon among adults on the spectrum.

Just a thought. I agree this is a complex topic and one we aren't going to solve here with just a URL.


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