pre-diagnostic assessment

Hello again TP (Ottilie)

Sorry - I forgot to say thank you for the podcast recommendation! (It's been a bit of stressful week and my head hasn't been thinking straight at all) I love podcasts and listen to them most days. I've just been scrolling around and noticed your post again and when I checked I realised that Squarepeg is available on the app I use to listen so I've subscribed. Thank you so much for bringing it to my attention. 

Inula

Yes, keep resting and doing what's right for you! 

Have you heard of Squarepeg? It's a podcast and community for female autists. There are 8 seasons now and lots of interviews with late diagnosed folks: https://squarepeg.community/podcast/  I've found it helpful this past year. 

Thank you Ottilie :)

I'm pleased too!

My younger sister congratulated me when I told her (she was diagnosed in her 40s) and I thought - yes - congratulations are in order. 

It's sad that you could have been diagnosed earlier but we're dismissed. It's a relief to finally get to the truth, isn't it? Knowing yourself earlier would have been helpful. That's why I went down the private route and not the NHS route. As part of my assessment we explored other family members who might be undiagnosed. Looks like I'm from a long line of neurodivergent folks :) 

Today I feel calm and at peace with myself. Hopefully I won't have too many turbulent days but knowing me they will pass. My daughter's best advice to me has been to rest and be kind to myself. She is a wise lady! 

Hi Autumn_leaves

Good luck with your assessment on Friday. I hope it is everything you need it to be! 

I felt completely out of control at mine. I struggled to focus on the words I needed to say and I'm pretty sure I went off on many tangents.  Thank goodness I've recently discovered fidget toys and had them to hand so I could squish them. I also printed off my "evidence" as I knew what topics we would cover and had a pen and paper handy so I could doodle. I also had chewing gum as I use that a lot when I need to concentrate. 

Thank you for complimenting me on my writing. I find it much easier to express myself in writing rather than the spoken word 

Perhaps you will share your assessment experience after you've processed it a little. I think it's incredibly powerful for those who are a few steps behind to see that they aren't alone in their worries and fears. 

Very pleased for you, Inula!

I was diagnosed last month. I first suspected 17 years ago when my son was diagnosed as a toddler but I had been told over and over by "professionals" that I wasn't and had I considered that his dad probably was, etc. I'm still angry about that as I had a mental health crisis a few years ago from burnout and the pain of that, and the impact on my family, could have been avoided. I feel validated and peaceful for the first time in my life. 

I've been sleeping a lot too. I feel like I have permission now to feel everything I've been holding in and had been telling myself was me being bad at coping, judging myself against something I can never be. The grief is real. It gets easier. Overwhelmingly it's positive with odd moments of tears and regrets. 

Hi there - 

Thanks for your update! 

I am delighted you have this safe space to come and talk to us all. You write beautifully. 

I am having my assessment on Friday and I am so anxious. Like you, I'm scared of a positive result as much as I am a negative one. I kind of don't know how to feel. Ah!

Please let us know how the next step goes, I will be reading. :) 

Hello Tribe

Just a quick update to my original post.

I had my assesment earlier this week and it went well. I was even brave enough to tell my daughter and a few other people about it beforehand. This is very unusual for me as I rarely share.

I really struggled to mask (which is a good thing!) because I was completely stressed out and overwhelmed by the process. My normal coping strategies failed me and I felt like I was a bit of a wreck. I'm not looking forward to my report when it arrives however I met the criteria for a formal diagnosis which will be a week tomorrow. 

For the first couple of days after my meeting I was in a bit of a state as I've started to pick away and things that didn't make sense but now do. I've shed tears for the kid I was. The one who was lost and didn't fit in. I shed tears for a random kid at my granddaughter's sports day. She reminded me of me. I've shed tears for the life I could have had but didn't get because of my struggles. I've been very exhausted this week and have been napping quite a lot. It's hard work processing all this new information. 

I thought I would be ok to remain self diagnosed but I needed validation. (Ohh my goodness - imposter syndrome is so difficult)

I'm very happy to know that there's a reason why I've struggled. Thank goodness for the internet. For the wealth of information out there and the availability of vlogs and forums so we can all know we aren't alone. 

Hi Inula, yeah - I actually suspected I had ADHD first, before autism came into the equation. I started pursuing an ADHD diagnosis through the NHS a few months ago and the referral form arrived in the post recently.

My parents had to fill out a form, and across the two of them I scored very low ('not at all' or 'sometimes') on every point except one. In fairness to them, as a child I didn't exhibit any of the typical ADHD criteria. I think I'm more inattentive too. I'm interested to see what comes out of my autism assessment; I've expressed to them I suspect I may also have ADHD, and they've confirmed that they can also test for that - and that sometimes autism and ADHD can mask one another. So we'll see what happens! 

(On a separate note, from conversations we've started having mum thinks she might also have ADHD; and I've also suspected for a while that my dad/members on his side of the family have autistic traits). 

I think we all get that level of doubt and imposter syndrome stuff.  I am an advocate of self-identification, but until someone rubber stamps it, that doubt is naturally there.

Having MH problems isn't inevitable though for autistic people.  We are a bit anxiety wired, but the problems come from not fitting in with the world.  I bet though that there are loads of undiagnosed and probably very unaware autistic people out there and who will never be aware because they have met with understanding family and friends and have carved out a niche in life that suits them.  In fact, had the sensory stuff never manifest in body and medical anxiety for me, I'd have been one of them...sure I had the old play ground bully stuff, can't drive, foodie issues, am a bit of a stress head and very quirky etc, but the upside of autism; the logic, creativity and hyperfocus etc has been serving me very nicely all my life - so no, but for that I never would have come to the attention of MH or ever had reason to consider I could be autistic either.

.... and errr looking about my family now I think there's a fair few more of us.  Funnily enough, I saw my brother this week who suddenly stated he's thought our mother is autistic for years.  Hmmm... I see it too - the exacting perfectionism, the sameiness, the lack of friends outside the family and lack of want of any, the non-stop talk until we've all lost the will to live about her jigsaws.  But hey!  She's happy in her own little world, so we leave her to it.

Like you, I had only contacted a medical practitioner about physical problems before I had an autism assessment. My family ethos was always very stoical, you just get on with things as best you can. However, my lack of engagement with mental health services of any kind had no impact on the assessment and I was told, about 20 minutes into the assessment, that on the evidence of my history of traits and experiences (plus the test results and my wife's input) that I would be getting a diagnosis of ASC. I did say that I thought that my normal state was probably mildly depressive.

Hi Touay 

thanks for your thoughts and good luck with your formal diagnosis. It must be a relief to know you're moving in the right direction. 

Just recently I've been analysing myself and my actions more and more and  have also check out YouTube and have spent quite a lot of time chatting to my daughter about her traits.  I was rather amazed that things that I considered very normal and mainstream actually aren't.  Most (if not all) of the YouTubers I've found are younger ladies.  I've yet to find one who's close to my age bracket but I do keep trying. Noting things that resonate with me from those videos is a good idea. Thank you for that 

Inula

Thanks for your comments abg - it's so helpful to know that I'm not alone in this part of my journey and to know that others are going through similar things.  I find that constant inner chatter of am I aren't I really distracting and it's a relief to know I'm not alone in that.  I was interested to see that you're considering you might also have ADHD.   I didn't mention it on my post (as it was about how I'm stressing about a pre autism diagnosis) but I'm also wondering if I have ADHD - most likely the inattentive type.  The only thing within ADHD that doesn't resonate with me is being impulsive.  Although impulsiveness doesn't sound like me I think if I were given examples of how that might look in real life I would find it easier to say oh yes - that's me. (or nope - that doesn't sound like me)

I don't feel particularly apprehensive about getting a positive diagnosis as that would be a relief to know why I am how I am. But my concern is getting a "nope" because then I'd be back to square one. 

Thank you for sharing your struggle with "in the moment" communications. I thought I was alone in that.  My assessor sent me an email (the consult is via skype) in which she outlined the topics that would be covered so I've started to compile examples in those categories to give me a starting point. I've found that really helpful. 

My appointment is quite a long way off yet but I will let you know how I get on.  I hope you get answers soon too

Inula 

Hi TriS

I'm sorry that you struggle with mental health issues. I don't know how that feels but I do have family members who struggle and I understand it's not a good place to be.  

You're right - if I get a "no" than where does that leave me (and anyone else who gets a no)  If not autism then what?  I guess I will have to face that bridge when I come to it.   I spent some quiet time with my daughter yesterday and I was going to tell her about my appointment but the time wasn't right.  I think maybe I will tell her at some point though.  Just not sure when.   Last night I dreamed I told her so it's obviously on my mind!

As others have said, we all feel like you describe.

I am through the initial assessment, and am waiting for the formal assessment.

For the initial assessment i reviewed a lot of the youtube videos where people describe their autistic traits ... youll be amazed at how many of the 'quirks' you thought were uniquiely yours, turn out to be common to other autistic people.   I used those as inspiration to go through my life and pick out the experiences and difficulties that align with the other autistic descriptions ... (e.g. a long hunt for the correct bedding)

I will go into even more detail for the formal assessment, just so i dont forget anything.

Thanks so much for sharing your experiences, Inula. 

In recent months I've also been connecting dots for myself and suspecting that I have autism and possibly ADHD too. 

I've uhmed and aahed about it (and gradually started to share my suspicions with my parents, which was quite scary), and I've been offered an appointment in a months' time. I need to let the know by today if I'm going to take it, and I think I'm going to say yes.

"... I've realised that I will continue to have the internal dialogue of am I aren't I for the rest of my life until I speak with somebody about it - hence the appointment."

^This sums it up really nicely for me. 

I'm feeling apprehensive about being given the diagnosis - and also about not being given the diagnosis(!) - but I think I'll forever be wondering otherwise, and I'll now be glad to know either way.

PS. Prior to your assessment, I wonder if you could write certain things down that you feel you absolutely want your assessor to know?

I also struggle to communicate "in the moment", but writing has really helped me - and its actually writing and processing recent and past memories!/moments/relationships that has helped me make sense of things and helped me realise that, hmm, I might have autism.

Thanks again for sharing, and keep us posted if you'd like to :)

I think most people have the same fears that if they get a no, they're back to having no explanation for the way their brain works. All you can do is be honest and trust the assessment to know.

And as a person with massive mental health struggles, be happy you've dodged that bullet! It's true that it's relatively common with autistic people (since we're not usually adapted well to life in a neurotypical world), there are a hell of a lot of autistic people who get by without those struggles and that's great.