Anxiety about upcoming assessment

C

Clareh37

New member
Hello. I’m new here. I found my way here from reading the book Unmasking Autism.
I’m 63 years old, and a few years ago (whilst learning about autism for my work), I came to realise that I was also possibly autistic. My brother was diagnosed AuDHD, and my father is undiagnosed Autistic, so it doesn’t seem unlikely.
I have always struggled, and most of my life I felt broken, wrong, useless, and always completely confused about why I found it so hard to fit in or make friends. I actually didn’t have any friends until I started drinking … which I think also says a lot.
Anyhow, I’m writing this to ask if other people awaiting their assessment were terrified of actually discovering they are NOT autistic after all. I felt such a profound sense of relief once I figured this out for myself (along with terrible waves of grief), … but if I am found not autistic, then I’ll be back with the belief that I am simply a broken human being, someone that just doesn’t work properly, and that terrifies me.
I am lucky enough to be in a position where I can afford a private assessment, so I have not had to try and explain myself to a doctor to be referred, so I don’t have any solid ground to base my belief on … just my own experience and research.
Do other people feel like this? And if so, do you have any tips to help me through this stage?
Thank yiu
Clare
 
Hi Clare!

I promise you, if you have close family members with autism or ADHD, the chance that you do too is HIGH not unlikely. Both of these tend to run in families lol.

Now let's talk about your 'broken human being' comment. I can say this until I'm blue in the face, YOU have to BELIEVE it but I hope if I say it out loud you can start changing your outlook. You are a wonderfully weird and interesting human being, you're unique with an amazing personality no one else on the planet has. You're intelligent, capable, strong, and you are doing great. The problem is not that YOU are broken and useless, the world should have done more to ACCOMMODATE you, account for your differences, your struggles, and your strengths. You don't work improperly, you work differently, and that's okay. Certainly around here, we cherish and celebrate all kinds of people who work in all kinds of different ways.

I was diagnosed very young and clueless, and my mum fought like a dying animal to get me all the support I needed, but I can imagine finding out you're not what you thought would be... distressing. I'm currently having a shoulder problem, and I THINK I know what it is but if I have to go tomorrow and find out it's NOT that, or the doctors can't figure it out right away, I'll also be feeling quite lost. We're not quite in the same boat, but I'm maybe on a raft some 50 feet to your left!

My best advice would be to take it a day at a time. Be kind and gentle to yourself, don't beat yourself up for your past struggles. You were misunderstood, and humans have a nasty habit of pushing away things they don't understand... including other humans. Once again, please know you're not broken or useless. The world is changing ever so slowly, and eventually all of us neurodiverse folks will be able to feel truly seen, supported and understood. I wish you nothing but comfort, love and happiness. Whatever happens, you'll be okay.

Thank you,
UnicornSpoon 🦄🥄💚
 
UnicornSpoon said:
Hi Clare!

I promise you, if you have close family members with autism or ADHD, the chance that you do too is HIGH not unlikely. Both of these tend to run in families lol.

Now let's talk about your 'broken human being' comment. I can say this until I'm blue in the face, YOU have to BELIEVE it but I hope if I say it out loud you can start changing your outlook. You are a wonderfully weird and interesting human being, you're unique with an amazing personality no one else on the planet has. You're intelligent, capable, strong, and you are doing great. The problem is not that YOU are broken and useless, the world should have done more to ACCOMMODATE you, account for your differences, your struggles, and your strengths. You don't work improperly, you work differently, and that's okay. Certainly around here, we cherish and celebrate all kinds of people who work in all kinds of different ways.

I was diagnosed very young and clueless, and my mum fought like a dying animal to get me all the support I needed, but I can imagine finding out you're not what you thought would be... distressing. I'm currently having a shoulder problem, and I THINK I know what it is but if I have to go tomorrow and find out it's NOT that, or the doctors can't figure it out right away, I'll also be feeling quite lost. We're not quite in the same boat, but I'm maybe on a raft some 50 feet to your left!

My best advice would be to take it a day at a time. Be kind and gentle to yourself, don't beat yourself up for your past struggles. You were misunderstood, and humans have a nasty habit of pushing away things they don't understand... including other humans. Once again, please know you're not broken or useless. The world is changing ever so slowly, and eventually all of us neurodiverse folks will be able to feel truly seen, supported and understood. I wish you nothing but comfort, love and happiness. Whatever happens, you'll be okay.

Thank you,
UnicornSpoon 🦄🥄💚
Click to expand...

Thank you! 💕
Your reply made me cry … but in a good way. I’m
Ve been oscillating wildly between thinking I’m obviously autistic, and then beating myself up for being ridiculous and ‘reaching’, and that I’m going to be sneered at in the assessment. I shall try and take your words to heart and be kind to myself.
Thank you so much 🙏
Clare

Ps. And good luck with your shoulder problem. I really hope it goes smoothly and helpfully at the doctors 🤞🏻
 
Clareh37 said:
Thank you! 💕
Your reply made me cry … but in a good way. I’m
Ve been oscillating wildly between thinking I’m obviously autistic, and then beating myself up for being ridiculous and ‘reaching’, and that I’m going to be sneered at in the assessment. I shall try and take your words to heart and be kind to myself.
Thank you so much 🙏
Clare

Ps. And good luck with your shoulder problem. I really hope it goes smoothly and helpfully at the doctors 🤞🏻
Click to expand...
Hi Clare,

Of course! I'm glad I could help. Whatever individual does your assessment with you, I want you to know that their entire job is to be kind, respectful, helpful, and truthfully and genuinely get you exactly what you need. A doctor that sneers at you is no doctor and you have a right to complain about it. I would expect such incidents are exceedingly rare and I expect you'll be completely fine. I wish you the best of luck in your assessment!

Thanks,
UnicornSpoon 🦄🥄💚
 
Hi Clair. Your post reminded me so much of my own build up to my autism assessment, 2 years ago. I am 62 yrs old and always felt different growing up and I learned to accommodate whoever I was with, peer groups etc. "Masking" I used humour to get out of situations I couldn't cope with or I played the "bad girl" role, anyway, there is also a lot of autism and adhd in my family too, Mam, brothers, my kids, my Grandchildren, that is why I went for the assessment, to help my Granddaughter understand her autism. I was the same as you, worried about being thrown out/sneered at! For thinking I was autistic, but as you have said, everything we have researched about autism fits us. It explains our feelings of not fitting in and making a mess of relationships, friends and work! The assessment went well and the therapist was very respectfully and kind and seemed to want to help me, so after worrying every day for 2 years!! I was given an autism diagnosis, I think I am also adhd but I think I am too old to wait for 9 years to find out. I hope you can try and not worry too much leading up to your assessment but I know that's probably impossible to do, I read through the criteria for autism and also did the pre-assessment questionnaires and scored quite high. There are so many other women out there and on this site who have been, are will be in your position, I wish you hope and belief.

Love from Pola bear 🐻
 
Polarbear said:
Hi Clair. Your post reminded me so much of my own build up to my autism assessment, 2 years ago. I am 62 yrs old and always felt different growing up and I learned to accommodate whoever I was with, peer groups etc. "Masking" I used humour to get out of situations I couldn't cope with or I played the "bad girl" role, anyway, there is also a lot of autism and adhd in my family too, Mam, brothers, my kids, my Grandchildren, that is why I went for the assessment, to help my Granddaughter understand her autism. I was the same as you, worried about being thrown out/sneered at! For thinking I was autistic, but as you have said, everything we have researched about autism fits us. It explains our feelings of not fitting in and making a mess of relationships, friends and work! The assessment went well and the therapist was very respectfully and kind and seemed to want to help me, so after worrying every day for 2 years!! I was given an autism diagnosis, I think I am also adhd but I think I am too old to wait for 9 years to find out. I hope you can try and not worry too much leading up to your assessment but I know that's probably impossible to do, I read through the criteria for autism and also did the pre-assessment questionnaires and scored quite high. There are so many other women out there and on this site who have been, are will be in your position, I wish you hope and belief.

Love from Pola bear 🐻
Click to expand...
Hi Polar bear

You are never to old to investigate your neurodivergent self. I received my ADHD diagnosis aged 62 after only 12 months from seeing my GP, via the right to choose pathway, (unfortunately only available on the NHS in England ). A further 9 months wait for medication titration. A combination of self understanding, learning new skills and approaches in line with my strengths and challenges, and medication has proved transformative in my life and for those around me.

If you think you may be ADHD I would encourage you to look further. Self identification is valid and helpful, however you will not be able to try medication without a formal diagnosis. AuDHD is different from being purely ADHD or purely Autistic. For me, understanding I was AuDHD, helped explain so many of the contradictions in my life. Desperate for order and routine, whilst constantly self sabotaging with being unable to follow them. It explained why I was always in pursuit of stimulation to the point of exhaustion. It’s having a brain in constant conflict with itself and never knowing which bit of me will show up.

I recognise all of the self doubt and gaslighting prior to my assessment. The inner voice saying “If you got to this stage of your life, how can you possibly be Autistic?”. However, the more I understood about Autism and there more late diagnosed Autistics I met, the more convinced I became.

If you would like to further exploring ADHD, I’m happy to suggest sources of information I found helpful. Between 50 and 70% of late diagnosed Autistic adults have significant ADHD traits, often sufficient to meet DSM 5 criteria.

Best wishes for 2026,

Wade
 
Thanks for this Wade. Sounds very familiar, the wanting routine and sabotaging it and seeking risky, stimulation etc. When I self referred for the NHS autism assessment, I also asked for referral for ADHD but don't think it happened and when I mentioned it at my assessment, the therapist said there is a 9 year wait for this! It put me off as I will be 70 by then!! God that sounds old. Still coming to terms with being adult never mind aged.

But thanks Wade.
 
Clareh37 said:
Hello. I’m new here. I found my way here from reading the book Unmasking Autism.
I’m 63 years old, and a few years ago (whilst learning about autism for my work), I came to realise that I was also possibly autistic. My brother was diagnosed AuDHD, and my father is undiagnosed Autistic, so it doesn’t seem unlikely.
I have always struggled, and most of my life I felt broken, wrong, useless, and always completely confused about why I found it so hard to fit in or make friends. I actually didn’t have any friends until I started drinking … which I think also says a lot.
Anyhow, I’m writing this to ask if other people awaiting their assessment were terrified of actually discovering they are NOT autistic after all. I felt such a profound sense of relief once I figured this out for myself (along with terrible waves of grief), … but if I am found not autistic, then I’ll be back with the belief that I am simply a broken human being, someone that just doesn’t work properly, and that terrifies me.
I am lucky enough to be in a position where I can afford a private assessment, so I have not had to try and explain myself to a doctor to be referred, so I don’t have any solid ground to base my belief on … just my own experience and research.
Do other people feel like this? And if so, do you have any tips to help me through this stage?
Thank yiu
Clare
Click to expand...
Hi Clare,

Welcome to the forum and Happy New Year!

What you are describing is very common to all of us late diagnosed Autistics.

You have already self diagnosed, and that is more than good enough. I too was frightened that having worked out that I was Autistic, an assessor was not going to see my Autistic traits. I know that I am a very proficient masker, at least in the short term, but it is obvious to an experienced assessor. In stressful situations it is increasingly difficult for me to keep it up. I was also worried I’d have to look for another explanation to account for the way I felt and behaved. I was right in my diagnosis and in all probability you are too.

As has been said, just be yourself. If you are masking, a good assessor will see past this. As good as we think we are, there are always subtle tell tale signs that give us away. They will be expecting you to be highly anxious and a good clinician will put you at your ease. It makes their task easier. Don’t forget, this is quite an objective process, with very specific criteria that they will elucidate. It’s not an unstructured subjective opinion. They have to be able to justify their conclusion in a report.

I really do wish you well. I’m sure you will be absolutely fine and you’ll get the result you need. As I said at the start, self diagnosis is the most important. Few of us are privileged enough to have a formal assessment, but it really isn’t the be all and end all. Having got to this point probably 95% will get a positive diagnosis.

Good luck, stay positive and remember you’re welcome here whatever the outcome. You know you’re Autistic and that’s all that matters.


Best wishes,

Wade
 
Polarbear said:
Thanks for this Wade. Sounds very familiar, the wanting routine and sabotaging it and seeking risky, stimulation etc. When I self referred for the NHS autism assessment, I also asked for referral for ADHD but don't think it happened and when I mentioned it at my assessment, the therapist said there is a 9 year wait for this! It put me off as I will be 70 by then!! God that sounds old. Still coming to terms with being adult never mind aged.

But thanks Wade.
Click to expand...
Hi Polarbear

I had no idea I was ADHD. I knew I was Autistic and that is why I went to my GP. My initial attempt was 8 years ago, but was pretty much fobbed off by my GP who continued to medicate me with anti depressants. It was the usual, “but you can’t be, you make eye contact, are highly educated, are married etc”. After further burnouts and the relief and revalation that came with the Covid lockdown, I knew I couldn’t go on as I was. I went back to my GP and said I was Autistic and would like a formal assessment. In her incompetence, she sent me for an ADHD assessment instead! This was only discovered when I was sent all the pre assessment questionnaires. I went through with the process anyway and yes, I’m an ADHDer, much to my surprise. A further 9 month wait eventually resulted in my Autism assessment and diagnosis.

Having raised a formal complaint with my GP practice, they have now completely overhauled their screening process, such that anyone asking for an ADHD or Autism assessment is offered both screening test and then simultaneously referred for both assessments if indicated. All staff, including GPs, have to take training in all aspects of neurodivergence. Neurodivergent patients are offered double appointments and quiet waiting areas as routine. One of my little victories!

Your therapist may have been correct in the time scale for ADHD assessment using the NHS services, but “right to choose” means that you can seek an assessment from an alternative provider, who has been vetted and approved by the NHS, and whose diagnosis will be accepted by the NHS. The waiting times are typically less than twelve months. You get to choose which provider and you can look up waiting times and particularly important, their expertise in diagnosing girls and women (often mis diagnosed and certainly underdiagnosed due to inherent cultural and gender bias).

I hope that Clare’s assessment goes well. I’m sure both you and UnicornSpoon will have given her the reassurance that we all need when facing an assessment, the result of which can be life changing……hopefully in a good way.

Lovely to talk with you.

Best wishes

Wade

PS. If it helps, I’m now reconciled to being an eight year old inside the body of a late middle aged man (euphemism for old). I don’t think this will ever change, I’m not convinced I want it to!
 
I like your attitude Wade! I will try to cultivate mine and accept my 8yr old self in an old woman's body...lol...love the image of that!! But it is a bit yuk.

Loved talking with you too.