I got misdiagnosed with autism. What are my next steps now?

Posted by gymnastxoxo96 @gymnastxoxo96, Sep 24 9:15am

Last week, I got the results of my autism assessment 2nd opinion saying I do not meet the autism criteria because it was a possible overlap with my anxiety and my possible limited intellect. I also have borderline intellectual functioning as well which an affect the autism assessment. The assessment was done on Telehealth. When I was a child I had speech delays and didn’t talk until age 2 and I got a PDD-NOS diagnosis at 3. I wasn’t diagnosed with high functioning autism until age 14 and the assessment was done in person. I had other assessments done autism assessments from age 20-29 and they all said I meet the criteria for autism. You think I was misdiagnosed this whole time and my autism was mistaken for my borderline intellectual functioning? Now my parents are putting me in unnecessary autism services and people think I can’t tell people’s intentions when I’m trying to date them and my parents are still protective of me because they still think I’m autistic. What should I do? You think I really was misdiagnosed with autism? Was the Telehealth assessment the most accurate diagnoses?

Interested in more discussions like this? Go to the Autism (ASD) Support Group.

Colleen Young, Connect Director | @colleenyoung | Sep 24 3:43pm

@gymnastxoxo96, you are asking good questions about next steps.
Being diagnosed with autism as an adult or as a child can offer clarity, validation, and access to the right kind of support. Similarly, being misdiagnosed can be harmful, as it means that a person may not receive the help and support they need.

If you believe your diagnosis is not correct, please seek a professional second opinion.

It sounds like your parents care for you and want to keep you safe. For you, this feels like they are being overly protective and arranging unnecessary services for you. Open communication about your needs and their concerns is really important. Sometimes it can help to have a social worker or therapist mediate a family discussion. This can help each person truly hear and understand what the other person is saying and means.

Do you have a therapist or social worker that you trust and work with already?

gymnastxoxo96 | @gymnastxoxo96 | Sep 24 5:38pm

In reply to @colleenyoung "@gymnastxoxo96, you are asking good questions about next steps. Being diagnosed with autism as an adult..." + (show)

@colleenyoung Yeah I have a social worker and therapist that my mom set up but they aren’t helpful at all and infantilize me and makes me worse than I am. Do you really think I have been misdiagnosed with autism based on the Telehealth appointment? They said I do not meet criteria for autism but when I went in person last year and the years before they all said I’m autistic. But I feel like I’m definitely not. What do you think? It definitely sounds like a misdiagnosis?

kjs831 | @kjs831 | Sep 24 7:27pm

why are you continually seeking diagnosis? A telehealth appointment is not how Autism is diagnosed because whomever is administering the test needs to watch every little nuance of your behavior, reactions, frustration etc. And if you are a woman, women often fall a few points short of what the starting score is, but because they still meet a lot more of the traits, they are diagnosed with Autism

Colleen Young, Connect Director | @colleenyoung | Sep 24 8:09pm

In reply to @gymnastxoxo96 "@colleenyoung Yeah I have a social worker and therapist that my mom set up but they..." + (show)

@gymnastxoxo96, you are asking questions that cannot and should not be answered on an online patient forum. A diagnosis is made through a comprehensive evaluation by qualified healthcare professionals using behavioral observation and developmental history.

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