Should I pursue a diagnosis in my 40s? To those of you who have, has it helped?

[ShouldIpursuethisfurther]

I have had mental health difficulties all of life and found life very difficult. My adult son was diagnosed with Autism/Adhd as a child.
I am going through another really difficult period and have left my job due to how anxious and burnt out I felt.
My gp referred me to a specialist gp, who thinks I may be autistic and wants me to pursue a diagnosis. I'm not sure how I feel about it, to be honest. If you asked me 10 years ago if I thought I was Autistic I would have said definitely not. Now, though, I am looking back at how hard I have found life and am seeing traits. I guess what I am asking is, those of you in a similar position to me, did getting the diagnosis help?

I’m in my 40s and have spent the past 3 years debating this same question. I’m finally going to be having my assessment in less than 2 weeks. The reason I decided to go forward with it is I just want to know, one way or the other. If it turns out I am autistic / have ADHD / both, then that will give me new avenues of better understanding myself and better navigating life. If no, then I will go from there. I believe knowledge is power.

I am autistic and have ADHD; I found out very late in life at age 45. It has been life changing, although a bit of an emotional rollercoaster too! The main thing is that I now view myself as a neuro divergent person with a different brain to the norm, rather than a broken neuro typical person, and am FAR kinder to myself than ever before. I understand my limitations more, I say 'no' more. My anxiety levels have reduced, I have far less meltdowns. I was / am very high masking so it's not been an easy journey & I still battle with my own internalised ableism, but the more time goes on the more things improve. It has also hugely impacted my relationship with my DH, for the better. I wish I had known years earlier. All the best!

You are so right about knowledge is power. How long have you been waiting for the assessment?

Thank you so much for your reply. The thing that struck me the most was feeling broken as a neurotypical person. I have always felt "broken".
I so glad you have had a positive experience with your diagnosis. You have given me the courage to go ahead with the assessment. The thing that is making me the most anxious is they have asked me to write to my gp to explain why I think I'm autistic. I don't know where to start! X

I thought I may have autism but my psychiatrist said he did not think so. I knew there was something going on. Something different about me. The way I think, communicate and act. My cpn said she felt I have adhd inattentive type. She told me to do a few reputable online tests to see what I thought and they all came back with adhd. I wrote a massive letter to my psychiatrist saying everything I felt was relevant. When I saw him he asked me a barrage of questions and said I am sure you have adhd and I am going to refer you. I cried as I felt some kinds of relief. I think you should persue the referral because at least you will know and with a diagnosis more support becomes available.

That's interesting. Thank you for sharing. I think I probably have adhd too. I'm glad you finally have a diagnosis and answers x

@ShouldIpursuethisfurther a close female relation of mine was diagnosed as ASD a year ago and encouraged me to pursue a diagnosis. I have an assessment in a couple of months' time, but I'm already convinced that I'm autistic.

As a PP poster said, I'm far kinder to myself now, and don't see myself as a lesser or broken NT person. I have already negotiated some reasonable adjustments at work (I'm a teacher). Recently, I had my first parents' evening in a classroom rather than the school hall, and it was approximately 1000% easier without having to filter out the bright lights and background noise. Interestingly, the ND pupils and I are often on the same wavelength and relate easily to each other. We seem to smell each other out!

Thank you for your comment. How long have you been waiting?
It's good to hear that your employer is being so supportive and making adjustments :)

@ShouldIpursuethisfurther I exercised my Right To Choose and went with Psychiatry-UK. It will be around eight months from first contacting my GP to having the assessment appointment. It think that's pretty good. The pre-assessment forms took some filling in, though!

My employer isn't really being 'so supportive'. The personnel manager, yes, but the head teacher not so much. She tried telling me that the hall wasn't that busy compared to the halls of nearby, larger schools...

Thank you x
That's awful that the head teacher isn't being very supportive. Especially in the role she is in 😢

I am in the same boat. My son was diagnosed a year ago.
We always knew he might be ND but I always figured his challenges were preemie related (he was born premature as was I) I still think “preemie-brain” is a thing (apparently there is such a thing as a Preterm Behavioral Phenotype which is a combination of ASD,ADD& Anxiety disorder) and we tick all the boxes. So it is very similar to ASD comorbidities, probably with a different or traceable cause (brain development in preemies follows a different pattern). But as this is a very new and underresearched thing I was advised to just accept autism as a diagnosis for both of us because we tick those boxes too and the preemie thing isnt in the DSM (yet) 🤷🏻‍♀️. So here we are…

I would advise getting diagnosed, I was diagnosed about 9 yrs ago after being treated for PPD but I didn’t want to believe the diagnosis. But since then I had multiple burn-outs and I just have to face the reality that I don’t function the way neurotypicals do and should stop trying to convince others and myself that I do. It is exhausting!!! The masking, the shame, the overwhelm… I am slowly coming to terms with my neurospicy brain (I loved this term when i read it somewhere 😆) and it’s hard but I believe life will be a lot better once I give myself the same space to bloom as I do my son! 🌱 🌺

The internalised ableism is so hard to tackle isn’t it?! We have been telling ourselves to behave the way others do our entire lives and now we discover we were never meant to. I just started my own ‘acceptance journey’ after my son’s diagnosis (during every meeting with his counselor where we were explained how ND brains work I just looked at them and my husband like “are you telling me your brains do NOT work that way??!” It was rather funny at the time and now the pieces fall into place). I am currently trying to figure out how to differentiate internalised ableism from who I really am without it and I’ve never been more confused in my life. Like I’m in an ocean storm and not know which direction to swim to.

I was wondering, since we are 40somethings on this thread… do you all also suspect perimenopause exacerbating all your worst ND symptoms? I read somewhere that neurodiverse women often get diagnosed in perimenopause because their symptoms become more pronounced after the hormonal shifts messes up our carefully crafted masking skills.
I for one am extremely tired and have the worst PMS (pre period AND pre ovulation so basically 50% of the time 😆). I can’t cope with extra stressors like noise during those days and it has definitely become a lot worse lately ..

anyone else?

@AnxiousAnnie1984 yes I've also read that part of the reason why more women in their 40s are being diagnosed, is due to depleting oestrogen, which exacerbates autistic symptoms/affects our ability to mask. It makes sense to me!

Thank you for your messages. Hormones definitely play a part. I remember my child really struggling during puberty, so I'm guessing menopause is the same.
I've had the link to choose who I want my assessment with. I'm so overwhelmed, that I'm finding it hard to make a choice 😪

I was diagnosed last year in my late 40s and, like other posters, it's helped me be a lot kinder to myself. All the stuff I've struggled with all my life has started to make sense and I'm starting to get away from the idea that it's because I'm stupid, lazy, oversensitive, selfish, a drama queen, a useless friend and all the other things I've told myself and been told by others. Now I've learnt more about autism and ADHD I've tried out some things to help like fidget toys (which don't help me much) and a weighted blanket (brilliant). It is an emotional rollercoaster coming to terms with it, and I've had quite a lot of grief about how much of my life could have been better if I'd known earlier, but overall it's been a positive.

Perimenopause seems to be a big issue and there's starting to be some more knowledge and research out there

https://www.autism.org.uk/advice-and-guidance/topics/physical-health/menopause

https://pubmed.ncbi.nlm.nih.gov/32003226/

Thank you for your message. Its weird as I feel as though my whole life has been a lie. The link you posted is really helpful, thank you. I'm definitely going through the menopause.

Can I ask who you used? My gp has asked me to choose but I'm.so overwhelmed with the information. Ideally, I'd prefer face to face. Thank you

Hi tribe! I'm just requesting a referral from my GP for inattentive AD(H)D at 44 years old. Luckily I have access to a private referral scheme through work so am optimistic that the wait won't be too long.
I retrained 18 months ago to start a new career in tech and work with lots of young hipster geniuses who are all neurodiverse and super supportive! So I'm feeling optimistic that a diagnosis and some workplace adjustments will benefit me, and help me sustain this time.
Looking back at my life and all the abandoned ideas and half-baked schemes that I couldn't finish... All the burnouts and times I had to leave a job before they fired me because I just couldn't maintain the hyper-vigilance I need to stop procrastinating... All the times I felt like such a failure!
I definitely feel that getting a diagnosis would re-frame all of this in my mind to how much I DID manage to do, considering what I was struggling with! Here's hoping anyway 😁

I went private, I found a local service that does both private and NHS psychology services and they follow NICE guidelines. The wait was about 5 months.

Thank you, it is such a minefield isn't it

Thank you for sharing your experience. I feel my u diagnosed ND has stopped me from reaching my full potential due to overwhelm/burnout. I was diagnosed with generalised anxiety disorder about 15 years ago, so always thought it was due to that.
I hope you don't have to wait too long!

Yes! Definitely! I am in a very similar situation at the moment also. However if you do, you need to ensure the Assessor is actually qualified in ASD, as some are only qualified in Psychology etc which is all you need to be to assess for ASD. Being a woman also faces difficultties so please make sure you have an assessor that is skilled and trained in knowing how the DSM-5 criteria reflects differently in woman, and in older women. As often we are misdiagnosed or undiagnosed because the assessor isn't qualified enough. I highly recommend giving Sarah Hendrickx a watch or listen to on YouTube, she is expertise and very good at telling what traits are seen in older women. I can send a link of a really good one of hers for you if you are interested.
I'm also doing a petition in regards to Autism Diagnosticians and criteria for that exact reason. I would hugely appreciate taking the time to read it and if you support it, to sign and share! X