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Anyone been for a autism assessment and not been diagnosed autistic?

11 replies

MunchMonster · 15/03/2023 12:52

What happened?
What did they say?
Did they offer an alternative diagnosis or something to look into?
How did you feel?

Thank you.

OP posts:

MunchMonster · 15/03/2023 20:22

Anyone at all?

OP posts:

MyNameIsIDontKnow · 15/03/2023 20:34

I have my second appt next week and am terrified of this happening. Has it happened to you or are you worried about it?


MunchMonster · 15/03/2023 20:54

Oh do you. Is it private or NHS?

I spoke to my GP about me wanting an assessment over a year ago. He didn't do anything and then I did the right to choose for both autism and ADHD. I definitely don't "look" autistic.

I'm hoping he will refer me.

OP posts:

MyNameIsIDontKnow · 15/03/2023 21:07

I went to the GP 16 months ago who said yes you sound like you are probably autistic, was referred to the mental health dept and eventually got an appt. Told them I had asked to be assessed and they got me to do some forms and agreed, like the GP, that yes it looked likely. The follow up appt another set of months later they said I referred you (to a local autism association/diagnosis agency I guess) but they arent taking adult referrals so I assumed that was that. Was then feeling down about things at work and really wanted a diagnosis so I could explain my difficulties and ask for reasonable adjustments and was looking into going private (although I can't afford it), when I got a call out of the blue in February from a company that my local NHS has now outsourced adult assessments to (similar to the right to choose path I think). They said it would only be a couple of weeks to diagnosis. So hang in there I would say!


MyNameIsIDontKnow · 15/03/2023 21:12

Like OP would be really interested to hear if anyone has had a 'nope, sorry, you aren't autistic and if there is any follow up support.


premicrois · 16/03/2023 10:11

Most people won't get to the full assessment stage if they are not autistic. The clinician who diagnosed me splits her pricing into 2 sections for that reason. She can tell at stage one whether or not you are likely to be diagnosed when the full assessment is done. Same when I went through CAMHS with the DC, there is a lot of form filling and appointment time before the final stage. If they don't think you will meet the criteria they don't put you forward.


BlackeyedSusan · 16/03/2023 11:26

In know a kid who wasn't diagnosed as no evidence of autism as a baby/toddler. Not sure if this is because the family can't remember because he definitely has traits. And he appeared more autistic than mine, in the same social setting, and was getting support in same school when mine was considered not autistic and needed no help.

Mine got diagnosed. She tick-tocked at the clock and miaowed at a story of a cat...and was full on autistic in the appointment.


EastLifer · 18/03/2023 11:55

Yes. Me. This week.

My journey was went for adhd assessment and have never considered autism. At that assessment I was told it was 'highly likely' that I was autistic. I did loads of research while I waited and it started to make sense.

As they said it was 'highly likely' I stupidly didn't prep and have a load of evidence ready. I assumed it was more tick box. At the end she said I had all the traits but as it didn't seem to impact my life negatively I couldn't be formally diagnosed.

I don't know how I feel about that TBH. I'm going to wait for the report and then decided if I want to see if they will reassess.


premicrois · 18/03/2023 12:02

Was that a full assessment or initial stage?


EastLifer · 18/03/2023 15:32

Final stage. It didn't help that I don't have any family provide evidence of child stuff. Once I have my report I will see if it feels reflective of not and the might ask for a second opinion.

As I'd already had an assessment for adhd it wasn't as in depth either...


premicrois · 18/03/2023 15:36

I had no family either but the clinician was skilled in asking questions to find the detail she needed. I had no idea that many of my memories indicated autism but they did.

I'm sorry this happened to you, it must be incredibly stressful.

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