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

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

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!

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.

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.

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.

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.

Was that a full assessment or initial stage?

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...

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.

Did you ever has for a re assessment or go for a second opinion?

This has just happened to me. Both my children are autistic (1 recently diagnosed), diagnosed when teens, and I am just like them! I honestly was expecting a diagnosis, but apparently not.
I have since done online CAT Q and RAADS-r test, and watched a TED talk by a girl who is autistic but initially 'failed' the assessment (her words), and that is so me!
I'm talking to a professional in this are I know through work and may investigate further. She thinks I've got so good at masking, it didn't help, despite describing all the sensory issues, social difficulties etc.

This is the number 1 reason for people not being diagnosed - particularly the latecomers/early-maskers (mostly women, but also men). When you've been living like this, masking for all you're worth, for a few decades...it's tempting to downplay the impact, to show how well you're coping.

Unfortunately, the final requirement in the DSM and ICD is that it significantly impacts your life. Their definition of "significantly" isn't necessarily the same as yours, and that's where the problems occur.

If you have a significant other available, and they're familiar with how you live and struggle, then it's really helpful to have them around during your assessment. That's what happened to me, and I got pulled up with "Actually, that's not quite right..." a number of times. If I hadn't, I wouldn't have had the diagnosis.

Just to update, a year later I went to see a female autism assessor who specialises in high masking autism and she said unequivocally I am autistic. I had the highest masking score she'd ever seen (the Cat-Q).

I'm now waiting for a conversation with my original assessing company to help them understand how they could be failing high masking autistic women (they requested this when I went back to tell them I'd been diagnosed).

I've been reading through this thread with interest for myself. Your outcome sounds like a great improvement @EastLifer . Well done for perservering. I'm wanting to get a 2nd opinion on my diagnosis. Would you mind sharing your 2nd opinion assessor, dM if you like. Thanks so much.

Interesting what you say @ntmdino about the impact on your life. It's hard to say how much impact it has, because it's how your life is especially as having an impact can mean different things to different prople! Even more difficult I guess if you have no significant other to take along to put a different point of view.
@EastLifer would you say getting a second opinion was valuable? It sounds like it was!

I used a lady called Clare Jack. She's not a clinical Dr but I decided I preferred to do it again with someone who actually understands it not just someone who understands and has studied it loads in women.

The link to her is here www.autism-assessment-online.com/

And yes, it's been massively beneficial for me. Mainly in relation to self understanding/ care/ love. There is grief there too for a life lived without the understanding but mainly it's gratitude for having that information at all and being able to build a better, more actively accommodated life for myself.

Those are great words @EastLifer . Very inspiring! Thankyou for sharing the contact.

Sorry the first part of my post was confused! I'd rather have used her (who is a PhD Dr) rather than a clinical doctor with no real experience or understanding of high masking autistic women!

Indeed, and that's the trap that many autistic people have complained about - the medical model of autism requires that it be a collection of symptoms and deficits that makes the person "less than" in at least three ways. Aside from the ideological problem that poses, there's the practical one: somebody who's been masking hard from as early as they can remember and seeks diagnosis in their 30s, 40s or 50s has worked damn hard at constructing an environment around themselves - both in terms of people and their physical environment - which minimises any difficulties to the greatest extent possible.

As a result, it's very possible that they used to experience those difficulties, but have mitigated them over the years such that they no longer do (much). That doesn't make them any less autistic, it just means that they're the lucky ones who've managed to figure out a way to live with minimal hardship in this world through painful trial and error. However, unless they get a good assessor who's going to dig to try to figure out the real answer to that last criterion, they're going to get a "nope, you're not autistic" answer. Which, to somebody who's reached the point of being in that assessment, reads: "Nope, you're not autistic, you're just broken".

The central problem is that the DSM and ICD are, still, aimed largely at diagnosing children and extreme-support-needs adults.

@ntmdino Thank you for putting that in words so clearly. I think I have created a structure of life so I can avoid the major stresses.
Absolutely the 'no' diagnosis has left me feeling yet more exhausted, confused and broken. If I am apparently 'normal' - which it appears I am - then I guess I am defective in a way and just need to keep pushing on. Right now I just want the world to stop and let me off, at least for a break ... Ho hum....

Interesting I've never thought of this.

Although when I thought I might be autistic my doctor said she could only refer me if she also thought it. I was very shocked as I thought it might have been Asperger's but since then they don't use that term.

Yes, and...of course, if you try to find a second opinion privately, you'll get people saying "Oh, you're just shopping around to get the result you want" when in fact you're trying to find a competent assessor who'll actually look beyond the surface level in the context of an adult who's managed to survive by the skin of their teeth to get this far.

I’ve certainly heard the view expressed that if you pay for a private diagnosis, you’re unlikely to fail to get one - which seems very cynical and suggests no professional in private practice is motivated by ethics! The assessment I had was two stage; I completed screening tools such as RAADS-R and, based upon the scores for those and a three-hour meeting, the psychologist suggested whether or not full diagnostic assessment was warranted.

Impact on life is highly subjective for me. Outwardly, no one would rate me in any way disadvantaged. I have a higher degree, professional qualifications and am employed. People don’t see a childhood scarred by relentless bullying for being ‘different’; they don’t see dyscalculia and appalling directional sense; they don’t see an almost total inability to figure out the abusive people or the group ‘vibe’; they don’t see a history of copying others to try and fit in and gain a sense of identity. I’m resilient but not unaffected.