Last year, I wrote one post here, feeling that it would be a return to blogging, and instead, so much happened last year that my life has changed yet again, and we all know that many autistic people struggle greatly with change or perceived change. I think most people would struggle with what we went through as a family last year and this year.
I mentioned that my Dad had some terrible health issues last year, and they continued throughout the year culminating in a severe health emergency at the end of November 2025, resulting in gastrointestinal bleeding whilst my parents were away in Stratford-Upon-Avon where my Mum was doing some captioning work. At the time we thought that he might be dying so of course I went there to be with them. Luckily, they were able to stabilise him and treat the root cause of it. We eventually got home and he’s been in and out of hospital for various things over the last 7 months, thankfully nothing as bad as in November.
The main major change now is that he’s been diagnosed with early onset Alzheimer’s. We’d (my Mum, husband, and myself) been taking on caring duties between us and this diagnosis helped a lot with clarifying why he was struggling so much with basic tasks like self-care, cooking, just remembering short term memory things, asking more questions, and having a bit of confusion. Life has changed so much and so writing and blogging has definitely been a lot harder. My brain is constantly whirring and in what I and my therapist call ‘Meerkat Mode’, so relaxation and indulging in essential special interest time has been disrupted. I’ve got little bandwidth for keeping up with people, even though I still care about friends and wider family.
I’ve mainly been sandwiching in doing some art, watching films and series with my husband Dan, and reading, in between trying to help my parents, and helping keep the house and life admin stuff going. It’s not always successful – in fact, with my ADHD and autistic task paralysis, executive function difficulties, and general chronic health issues – I’ve been too tired more often than not. Having a therapist during this time has been an absolute life saver and especially because she specialises in being a neurodivergent affirming therapist.
And, at lost last, after 4 years of waiting on the NHS list, I’ve started my autistic and ADHD official assessment. It started with a huge stack of assessment forms, then this week my Mum had the family assessment phone call (which took about 2 hours with a 5 minute break), and I’m now waiting for the big day itself in early August. I’m very nervous and the imposter syndrome is syndroming, but I’m trying to write down and keep track of anything that I can think of or have difficulties with that will help in the assessment. I was offered an online one or an in-person one and took a while to decide. It’s mainly because being deaf, I need to make sure the access is right for me.
Online, I can use auto-captions but the problem is that they miss the mark for longer words or names, and I’m left guessing and trying to fill in the gaps. I use them for therapy and we laugh about the weird substitute words but for something like a life changing assessment, I think in-person is better no matter how stressed and nervous that makes me. My husband is coming along to be my lipspeaker, though I was offered a BSL interpreter (not that useful right now because I’m out of practice with BSL and I’d rather not have an extra person there).
I’ve been trying to prepare by going through my four years of journal entries, notes, and lists of things I might find useful, plus the 30+ pages of assessment forms I filled out. I’ve also found it comforting to watch YouTube videos of other autistic and ADHD people talk about the process so I feel more ready for it. I have a feeling it might take a bit longer than most assessments because of my deafness and also it’s a combined assessment of autism and ADHD. They usually run 2-3 hours long, so we’ll see!
In the meantime, I’m experimenting with things that I’ve denied myself a while by buying some fidget toys, and a Squishmallow soft toy (Mandalorian and Grogu themed of course), because when I was going through the sensory part of the written assessment, I realised I use cushions all the time to hug and as a comfort thing. Only at home and when I watching TV or reading, but I thought it might be a good idea to try something geared more towards that. The Squishmallow is absolutely perfect – it has a very soft, but firm squish to it, which makes me feel a lot calmer and soothed. In fact I was so surprised by how soothing it was and the exterior is so soft and strokeable.
I’d assumed that my sensory profile was mainly smell and visual based, with some movement and touch – but I’ve since realised how much I crave nice textures, like firm hugs, like to hold cushions, prefer cotton and linen to wear etc. The difference between an allistic/neurotypical person and an autistic/ADHD person needing sensory accommodations is usually the intensity and how often you want/do those things. Because I’m masked most of my life, I hadn’t realised that I was denying myself certain things, not making accommodations for myself.
Unmasking or just the exploration of yourself and your needs as a late-diagnosed adult is a series of revelations. It’s not so much that we become different people, although that can happen, but that we finally let ourselves be who we are, without (I hope) judgement or fear. I might not ever be free of masking and masking can be very useful and safe in some situations, especially as a deaf autistic woman (the same goes for people of the global majority, LGBTQIA+ people, and people with co-occurring disabilities). I sometimes find it hard to see where I, myself begin, and the mask ends, but I’m slowly starting to see myself better. Whatever the outcome of the NHS diagnosis, I know that I’m autistic with ADHD. Otherwise I wouldn’t bother going through this process.
In January I started a Substack called Magpie Pebbles and have one post up about Frida Kahlo, art, and disability. I haven’t managed another article yet but I’m hoping it will serve as a low pressure place to write about my interests and explore topics that mean something to me. I want to use both this blog and the Substack to ease back into writing again when I can manage to make the time. I’ve had many ups and downs with writing over the years especially after burnout, but I want to have a space to connect with people and share art, ideas, and ways we can make the world (our immediate community, and the wider community), a more equal and beautiful place. It’s especially needed right now, and for the future.
‘At the end of the day, we can endure much more than we think we can.’ – Frida Kahlo
Cats and Chocolate 