Monday, March 19, 2018

Why functioning labels aren't helpful

Functioning labels aren't helpful. Basically high functioning is another way of saying your autism is hardly felt by others. Low functioning means it is heavily felt by others. In real life, I might be an autistic level 1 but it's not that helpful on the days I'm so overwhelmed and I can't get out of bed. Or I'm having such a bad meltdown that people think I'm bipolar or have serious anger issues.

Women who suspect they are autistic and get turned away need another doctor. Saying you don't have enough problems to warrant a diagnostic is STUPID. it's like saying you're a little pregnant. We're not going to address it now. Come back when you're more pregnant. 


 I got to 54 years old without a diagnostic. I spent 2/3 of my life thinking I was a loser who can't keep it together. I spent a few years researching bi-polar disorder and was convinced I might be bi-polar 2. Except I asked my mother and she said I was nothing like my dad, who was bipolar. If I'd known I was autistic maybe I'd have a better self image. I got told most of my life "For a bright girl you sure make stupid choices". Yeah I have an IQ of 135 but on some days I can't get out of bed. How is the functioning label helpful???

The younger an autistic person knows they are autistic the sooner then can 1) know it's ok to be the way you are 2) know there are challenges 3) get the resources and help when you need the help.

In my 20's and 30's I struggle with work, motherhood, relationships.But I trudged through. The older I get the harder it is to spend all my life masking. Pretending I'm something I'm not so I don't stick out like a sore thumb. It's also harder to keep going and there is such a thing as Autistic burnout. I've had 2 so far.

As far as getting diagnosed for autism, I used the checklists from Tania Marshall. She has one for school aged girls and one for adult women. The one for school aged girls was helpful for me at 54 because both my parents are dead. I could at least describe myself at 5-6 years of age to the therapist so he could see my issues aren't new. I had the same type of issues in grade 1. 


Once I convinced my therapist I could be autistic, he reviewed the IQ tests, the reviewed the MMPI, [I did those 8 years ago, when he first assessed me with ADHD] asked me questions about my childhood and then sent me tested by someone else in his office who had me do the ADOS [which is a test aimed at children and teens - so explain how to brush teeth, make a story out of random objects, make story from a book with just pictures. etc.. ] and apparently though I thought the ADOS was weird, it was that which confirmed my diagnosis. My therapist then said I was really "high high functioning".

Yeah. He actually said that.  Meaning I hide my autism so well it took him 8 years to notice it, even though I've mentioned it at least once a year the past 6 years!   


So most days when I get home from work, I cry for an hour because I'm tired and overwhelmed and can't cope. So I'd rather autism level 1. Because I certainly don't feel like I'm functioning!

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