ASD diagnosis rejected

I had a similar experience at 53 , told I have ADHD but didn't meet the threshold for ASD. I didn't have the energy at the time to fight it but planned to go private. A year on I really can't be bother to waste the money because it ultimatly wont change who I am. I have found a massive amout out about myself going through the process though. Just remember it will not change who you are and there is no gurantee a private diagnosis will give a diffrent result. Good luck.

I second this. Sara is great.

Hi, I was diagnosed privately as I was moving countries a lot at the time and was struggling a lot and needed some answers but was unlikely to make it the end of any waiting list before having to move again.

I had a very good experience being diagnosed via Sara Heath : https://shropshireautonomy.co.uk/pre-diagnostic-support/  She is not able to make a medical diagnosis herself but she works together with a consultant psychiatrist who also has experience diagnosing ASD for the NHS who will be able to make a diagnosis. Sara can do a prediagnostic assessment and will write a detailed report and if there are grounds for a diagnosis you can then arrange to see the psychiatrist she works with who will have access to the report and will also make his own assessment. I had a very good experience and it was relatively affordable. I would recommend contacting Sara to find out more. She is very easy to talk to and autistic herself. 

I had no issues having this diagnosis recognised by my GP or university or any employer. 

I hope you can get the validation you need.

I would go private then you can also claim pip if you get diagnosed what makes you think your autistic 

In 2019 I had an initial screening at my local ASC facility. They said I was anxious and would not offer me an assessment. I went back to my GP as I knew I was entitled to a 2nd opinion. My GP got out of county funding and I was able to be referred to the Lorna Wing Centre in Chigwell Essex. In Jan 2022 I had my assessment and got my diagnosis. Good luck with finding a way to get another assessment, I did a lot of research and was determined to get my autism confirmed.

Hi Mia151515

Oh my word...that sounds so much like what I have been through - see my post Finally...a confirmed diagnosis - *long story* - Autistic adults - Home - National Autistic Society - Our Community

It is honestly worth seeking a second opinion - whether through Right-to-choose or another avenue applicable to you - but after going through what I went through - I honestly do think it is worth trying for. My initial "diagnosis" was that I was just anxious through "trauma" after being bullied at school...because I was different lol. So after talking to my very kind doctor (yes I understand that not all are as sympathetic as mine) and when I did get to see the head psychologist, she totally understood how I was and what mistakes were made.

But also, if you are fine with just "self diagnosing" yourself with having ASD - that's fine as well. 

It's your own choice as to what you do - but I hope I've helped.

Mweekie xx

Hello. 

Sorry to hear this happened to you. I got my diagnosis last year and I was a pile of nerves before it was confirmed. I totally understand how you're feeling, if my diagnosis had been rejected I'd be devastated as well. 

I had self diagnosed for a few years before I got my formal diagnosis. Once I started learning about ASD, it was like everything suddenly clicked. It explained so much, and it made so much sense: Like, "I'm not broken, I'm just wired a bit differently".  A negative diagnosis would've been devastating and completely invalidating of my internal experiences. 

Unfortunately, I hear that being misdiagnosed is very common, especially in adults and even more so for women, as a lot of so-called professionals have outdated ideas of autism and do not account for masking. They think, you can't be autistic, you make good eye contact! You can socialise! You have a relationship, a job, etc, etc.

Please do get a second opinion, or even a third, until you find a diagnosis that you're happy with and feels right to you. 

I have a tip that may help you. In my case, I started journalling "reasons why I might be in the autistic spectrum" prior to my assessment. I recounted my life experiences from childhood, as a bullet point list. It ended up being an 18 pages long.

During the assessment I ask if I could forward that list to them. They then told me in the diagnosis session that it really helped, that she had discussed it with her supervisor as there were some things that haven't shown up during the assessment call but my list covered them well.

Lastly, if you're still looking for a private assessment, I suggest you try 

https://www.problemshared.net/

They work with all the private health providers and also NHS. They were amazing for on my ASD diagnosis, and my partner also got diagnosed with ADHD through them.

Good luck!

I don't know how you are getting on.

If you are looking for a private solution, this place supports private assessments, has availability, has an interest in and are aware of female differences and is targetted at adults

Neurodivergence in Women - Join Psychology - Psychology Service | Berkshire

They are based in Berks but can do things online.

You can have an initial consultation to see if there are grounds for continuing, £300 for 90 mins which comes off the cost of the full diagnosis if you proceed, so is cheaper than opting for the full thing straight off.

I have no commercial link but have used them and Dr Coombs is knowledgeable and quite nice.

I am sure there are others available.

If you are going down the private route, my advice would be to find someone who specialises is late diagnosis in women or high masking women (if you are high masking). I'm sorry you've had this experience with the NHS. I didn't use them myself but my assessor specialised in female Asperger's (as it was known at the time) and she got it bang on. She could identify masking and knew how to subtly being out autistic traits, like when she told me something about her pet cat to see how I responded (she knew I had a cat). Instead of asking her further questions, I started talking about my own cat, apparently NTs wouldn't do this.

You may not be autistic but if you strongly feel you are neurodiverse I think there are places who will assess for ADHD as well, maybe even other conditions at the same time, rather than just autism. This may be useful for you as a lot of conditions overlap.

The same happened to me. It's a crushing blow.......I did get recomended a therapist (sara heath) who i sought for a second opinion because I basically knew like yourself they were wrong.

Dont beat yourself up, it happens to some people who dont present as visably autistic and there are some great NHS practitioners but also some who will be looking for rain man.

Definately go for a second opinion. They basically told me I just had anxiety and was basically mental lol......absolute clowns they were. Still makes me angry thinking about it. The NHS is not a gold standard for dignosis and if i could do it again, i would stay well clear of the assessor who I got lumbered with.

Hi and welcome to the community. I'm sorry to hear this, it's one of the reasons I chose not to pursue a diagnosis, despite scoring 42 on the AQ50. Please be reassured that whether you get a formal diagnosis or not, you are still welcome here.

No reason you can't have anxiety AND autism. Saying they're "not going to diagnose" you sounds different from "you are not autistic". My diagnosis relied a lot on childhood. Luckily I have a good memory and my mum has been dining out on "guess what weird *** my kids got up to" stories for 40+ years. She also worked "in the industry" (children and young people's services) and had experience enough to spot what was weird. That really helped me get a diagnosis. My private provider charged closed to £1k than £2k and the whole assessment process took less than a month from enquiry to diagnosis. The full report took another 3 months mind you.

Thank you! I have done a lot of online autism tests and ive scored very high on all of them, hence even getting this assessment in the first place. I think i will go for the private route as I am still very certain that I am autistic. I really appriciate your comments so thank you

Mia151515 said:

Today I had my feedback from my ASD assessment and i've been told they're not diagnosing me

It is worth realising that this does not mean you are not neurodiverse, just that you didn't reach the threshold of being autistic "enough" to qualify as disabled.

This is essentially what the diagnosis is about - are you badly enough affected by enough autistic traits to meet the threshold as being disabled.

While it is dissapointing to not have a black-or-white answer your research has clearly pointed out that you have a range of autistic traits so what you can do is work to lessen the impact these have on your life, thus improving your overall quality of life.

Mia151515 said:

I am now looking at going down the private diagnostic route as I am not happy with my result from the NHS.

I would recommend speaking to your GP first to find if they will accept the diagnosis from the company you want to use as I have read of people on where who asked for it to be added to their medical records but it was rejected on the basis that the assessment company were not approved.

Also be prepared to pay between £1k and £2k and still have a wait time of months as there is a lot of demand for this, even privately.

If I were in your shoes I would take several of the online autism assessments and see if I was scoring above the threshold for a diagnosis otherwise there is a significant risk you could pay all that money privately and still not be given a positive diagnosis.

So the tip for finding something positive would be to take control of your mental health, work on learing more about it, teaching yourself techniques to build resiliance, avoid the pitfalls and become more confident in your strenghts.

Thank you - i'm trying to be kind to myself but now feeling very lost. 

Yes it was one of my worries too and now its actually happened i feel distraught but i wouldn't let it put you off going for the assessment as you never know.  I'm still awaiting my full report on why they didnt give the diagnosis but from what the assessor said on the phone, they think most of my experiences link to anxiety (even though anxiety definitely wouldn't explain alot of my difficulties) Thanks for your reply :)

I can't imagine how this feels. It was my biggest fear when I went for assessment. 

I would definitely see if you can ask for a second opinion/raise a complaint that you don't think they've taken gender differences into account.

Be kind to yourself.

I’m sorry to hear that and I can only imagine the upset. It’s one of several reasons why I am not sure about going for an assessment. I am pretty sure I am autistic and not sure how would I react for someone to contradict what I know in my bones to be true. Are you seeking a diagnosis for validation? Did they explain why they thought it wasn’t autism in their assessment?