My daughter was diagnosed with PDD-NOS when she was 2. She will be 23 this month. She was low functioning at first but with a lot of therapy she improved. At age 7 her psychiatrist said that if I had brought her in for diagnosis then instead of when she was younger, she'd have an Asperger's Syndrome diagnosis. At age 14 she had a psych eval that changed her diagnosis to high functioning autism. She graduated high school with some special ed support, not a lot, and an advanced studies diploma.
But as an adult, she is not able to do adult things. I have had to play helicopter mom with her work more than a few times, present myself as her disability advocate, because she can neither express what she is thinking nor can she understand what is said to her when it comes to things that are not routine. She's smart, she has an excellent vocabulary, but putting together or understanding the words when it involves difficult or unusual concepts she just can't do. This involves both abstract and concrete things, like setting up direct deposit. She couldn't live independently because things like budgeting or knowing when to call the landlord to fix something or what to do in cases of emergency she just can't grasp. One night I came home to a busted water pipe that had been pouring water for a couple of hours. She didn't know what to do so she waited for me to come home rather than call emergency maintenance or even call me so I could walk her through calling emergency maintenance. She has a boyfriend but it's clear it's more the 13 year old holding hands type of relationship instead an adult relationship because developmentally she's not there yet. She has tremendous difficulties in getting jobs because stressful things like job interviews really bring out her social and communication difficulties that aren't apparent during small talk situations. I can't count the number of job interviews she's had and she only succeeded in getting a job when I found out that she wasn't self-identifying as disabled and coached her on how to tell the interviewer she's disabled in a way that affects communication and socialization.
It just seems like things have gotten worse after high school. She completely digs in her heels when it comes to doing something like getting on MeetUp because she has a high level of paranoia about how people will treat her, so she is fairly isolated except for internet friends. I don't know if the isolation has caused a regression. I don't know if I'm expecting too much from her as far as adulthood behaviors because every time she's been tested her developmental level and her social/emotional level have been exactly 2/3 of her chronological age. (When she was 18 months old she tested as a 12 month old, when she was 12 she tested as a 8 year old, etc.)
The department of rehabilitative services had her tested recently to see if she qualified for services. They categorized her as severely impaired in several life skills areas; we have an appointment soon to discuss services but I already know she's considered by them to be impaired enough that she will bypass the wait list. Seeing how it was their doctor that categorized her and everyone knows that the government's doctors tend to minimize what they can to save agency budgets, she has to be pretty bad off.
I hear of adults that live independently, that are married, that are successfully raising kids, and she's nowhere near that level of functioning. I read the new DSM stuff and her vocabulary and IQ would place her as high functioning. But I'm wondering if it's possible that she went from high functioning back down to moderate functioning because she's clearly not able to do things that adults normally can do.
In reply to marianne van der Arend:
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error fix
this was the only way i could fix the error. I reposted because the program told me it was not posted yet. After posting 6 times it posted all of them . At least that is how it looked to me.