The diagnosis is official! I am an Aspie!

[Underdawg]

I introduced myself awhile back after doing some online Asperger's/Autism tests. I scored way up there on all the tests. I then talked to my family doctor who thought it was quite silly and insisted I just have Tourette's syndrome. I dropped it for awhile but kept reading everything I could find about it because the symptoms fit throughout my whole lifetime. I was then called in for my annual Medicare check up and the NP who was asking me all the questions outrightly asked me if I had ever thought I might have Asperger's. So I told her I was convinced that I do but that my doctor was not interested in checking me out for it. She made me another appointment with my same doctor, just to discuss Asperger's and she said for me to ask for a referral.

I got a referral from my doctor to a neuropsychologist who is familiar with Autism Spectrum Disorders and she set me up for a whole long day of testing, first the QEEG and then about five hours of cognitive testing. Two weeks later I got the results. Both the cognitive testing and the brain mapping showed Asperger's. In the cognitive testing there was a range from 30th percentile in some portions of the test to 100th percentile in other parts. Since I have mostly always thought of myself as smart, it was a shock to me to see several areas where I do not perform well at all, like following oral directions.

Sadly, it looks like as I age I am losing some of my coping skills and seem to be getting more like I was as a child. My response time is slow. If someone asks me a question, it takes awhile before it gets run through the neural circuits and I get an answer for the person. I have to translate from pictures to words and then everything has to be spelled correctly like it's on a screen in my head and then I read it off. All that takes time. And now, too often, the pictures will be there and I struggle to find the words to go with the pictures.

In my post a few months back I had also mentioned about my three year old grandson. He was tested by the same clinic and has a lot of traits of autism but was not given a diagnosis because he is not having a lot of social problems. The QEEG showed problems common to Asperger's in the MU waves. They are going to test him again in a year. He also scored really high in some parts of the test and really low in other parts.

 

[Mia]

It must be good to get confirmation for something that you've suspected all along, and insisting that you get the proper tests for it. Congratulations on pursuing it and following through. I am also on the spectrum and only came to realize it at the end of menopause, somehow many indications began to show themselves as I've aged. It explains many of my difficulties in executive functioning and sensory difficulties. It's good to know that all these years that I've noticed changes in the way I think and perceive are not an illness. Think that finally having confirmation to things that you've suspected would be a good thing.

 

[Underdawg]

Yes, Mia, it feels good to have a diagnosis rather than just a mystery disorder. I am still as wierd as I ever was, maybe seem more so now with the red glasses that have brought a halt to all the symptoms that were thought to be Tourette's for so many years. The involuntary movements were caused by sensitivity to light, especially fluorescent light, and peripheral motion at eye level. I am less embarassed when around other people because the funny glasses attract much less attention than the noisy spasms did. I was also relieved to know that it was not something like Alzheimer's affecting me, but that where I am heading is somewhere I have already been. It also helped my grown kids be more understanding as to why I got an extension on my taxes the last three years and this year had to have my daughter help me. The neuropsychologist said that I experience something called a shutdown that is sometimes a problem in autism. I can still take care of basic needs, feed my dogs, etc., when I am in a shutdown, but can't handle other things like my bank account. I have to make lists to even get simple things done like eating and drinking. The diagnosis helped everyone in my life understand why.

 

[Progster]

Hi, and congratulations on your diagnosis! I'm also finding that it's getting harder to cope as I get older. I do all the basic things, and just about cope with work, but not the housework and other extra things going on. I can't cope with as much as I used to be able to.

 

[Elemental]

Welcome back to Central site Underdawg

In the cognitive testing there was a range from 30th percentile in some portions of the test to 100th percentile in other parts. Since I have mostly always thought of myself as smart, it was a shock to me to see several areas where I do not perform well at all, like following oral directions.

100% relate to what you say here. In my 1998 diagnosis assessment I was frankly brilliant in parts of the tests the assessor said I was only the second person in her assessing career to ever answer correctly " Who wrote 'Faust' " in the General Knowledge part of it & my language skill & comprehension were s*!@ hot too
.
In other test areas like trying to complete a simple jigsaw puzzle to get a ziz-zag pattern central in it (spatial-temporal awareness) or trying to recall serialized numbers (numerical dyslexia) or identifying missing objects, my brain just froze up. Accompanied by a roaring pressure sound in my ears & head & a titling sense of balance (poor physical co-ordination & a lack of balance bordering on dyspraxic)

With the puzzle task, it was like I physically perceived the "missing link" in my neurological chain: between deciphering the required pattern through my eyes & brain & executing before replicating it through action. Your spoken directions example too, is an impossible task for me & fluorescent lights & even light / shade differences can trigger migraine visual hallucinations

Like you say, it is the contrast between the types of stuff we can excel at, or can at least manage okay & the stuff where we totally fall down, which can prove the most confusing & difficult to understand. We can be hyper-capable in some areas whilst totally retarded in others. It's the paradox of this which can feel so frsutrating & also can make others sometimes skeptical about our condition & how it manifests. My ASD-learning disability diagnosis did not mention Asperger's Syndrome but it was doing the online tests for this & scoring highly a couple of years ago, which led me to read about & research my diagnosis after a long period of denial & personal non-consideration.

I don't know if it's getting more difficult with aging; I think I accommodate it more easily & with less guilt attached.

- sorry if that went on a bit: a little cabin-fevered today + a zingy full moon

 

[watersprite]

Welcome Underdawg

 

[AspieCialGuy]

Congratulations Underdawg, knowing why is a liberating experience. I'm like you though, even though I now know more about myself than ever before, it doesn't make the issues we face just magically disappear. But knowing why and knowing there are tens of thousands going through identical situations helps.

What your neuro-psych called "shut down" I call an internal meltdown. I don't show any external signs, but I am clearly in meltdown when I start my very slight ticks and stims that even my partner can't detect yet. Even the basic things give me 'mind-blocks'.
I think I tend to have these moments after a long week and I am grocery shopping.

But knowing why I am having trouble helps a lot, because I know I am not losing my mind (completely, at least )

I thought of a funny joke after reading something you said -
"My doctor told me I had Tourette's.... I said %$#@! no I don't"
Sorry if that offends anyone with Tourettes or my characters offended.

But seriously, I get where you are coming from when you mentioned Alzheimers.
I forget things all the time, like really quickly. I think it is because my mind is occupied with a 1000 other trivial and useless things that it thinks are more important, so there is no room to retain the thing I was supposed to remember!

I also distract myself go off on tangents. I start an action then go to something else. 20 minutes later I'm like "oh, yeah I was meant to do xyz" this can happen more than once with the same task. So it's easy to think you have alzheimer's, dementure, absent minded, etc.

 

[jayster]

You're wonderful people - I'd like you to know how reading this thread is so helpful to me.
I only realised that I have Aspergers early this year, my perception had always been that I had a mental illness which I had to hide. I've had a couple of short spells on antidepressants.
As I entered my mid 40s, I suffered with extreme, persistant anxious / depressive states, had vivid childhood memories and began to identify with myself as a child in a way I never had before.
Further reading, especially about female specific Aspergers traits, and, wierdly enough, a newspaper article by Susan Boyle led me to my OMG moment.
So, now I understand myself a little better. I have a date for a diagnosis. As far as I can make out, in the UK "older diagnosis" Aspies get what they call "D&D" - diagnosed and dumped.
I identify strongly with

I am losing some of my coping skills and seem to be getting more like I was as a child

and on the plus side, I am actually improving my skills in some areas.

We can be hyper-capable in some areas whilst totally retarded in others. It's the paradox of this which can feel so frsutrating & also can make others sometimes skeptical about our condition & how it manifests.

I totally agree with this, plus, the "less guilt attached" - that's about the only relief I've found since I realised my Aspergers.

What your neuro-psych called "shut down" I call an internal meltdown.

I call it internal meltdown , too. I've never had a screaming, hyserical episode. I just have to sit with my eyes tight shut, whilst it feels like the entire fabric of my being shatters into shards and falls endlessly. It can go for days, stops me from doing anything useful and gets me so frustrated.
I think your Tourette's joke is OK, the sort of gag I might have cracked once upon a time.

 

[Cosmophylla]

Hi Underdawg, thanks for a wonderful intro post.

I'm also "regressing" as I get older, and at the moment I'm going through what I thought was a burnout but after reading your post I think it may be a shutdown. I have suffered brain fog before but that was hormonal and i felt physically different. This shutdown/burnout happens when I have too much I'm trying to do. Following too many threads on AC, or a busy schedule, stressful events, many chores to keep up with, lots of things to read and research, and so on, just make my brain so muddled these days. When I was younger it would take much longer for me to reach this point of feeling as thought the water is rising around me. Now it takes just a few days.

You might enjoy this thread about midlife burnout.