So, I woke up at 4:40 this morning to get dressed and drive to Oxford to get the coach to London and managed to navigate the Tube (after pre-planning it all, of course, with each Tube line identified, which direction of travel and which stops to get off at) and DLR (a first for me!) to get to the ExCeL Centre in east London. It has been a long day, but I’m going to persevere and write up my thoughts now while they’re fresh in my mind.
Widgit Software presented about using symbols (i.e. Communicate In Print) and announced that the new version will be released in September. Quite similar to Makaton symbols, but a bit more colourful and descriptive. Then a short session about Dyscalculia and how children on the spectrum can struggle with understanding numbers and maths… I was hoping for insight as to why I was good at math in school but still to this day cannot do mental arithmetic to save my life. I then jumped over to Michael Barton’s talk (author of It’s Raining Cats & Dogs and A Different Kettle of Fish) about surviving at school and succeeding at work. I remember seeing him speak at last year’s show in Birmingham; his books are about literal interpretations of language and how confusing these phrases can be for people on the spectrum. I’ll admit, a lot of these phrases I know because they have been explained to me (“wears her heart on her sleeve”, “laughed my head off” etc.) but the one phrase I always have to look up is “butter wouldn’t melt”… I literally only looked it up the other day and I still can’t remember what it means.
After that one, I was keen to see the Speaker of the House of Commons, Rt Hon John Bercow MP provide an exclusive personal perspective on being the father of an autistic son… but when I got into the Autism Matters Theatre, the next session’s slides were already on the screen… they appeared to have changed the timings without any notification, or he just wasn’t able to come… either way, that was disappointing. I went to grab an early bite of lunch (as breakfast was at 5am) and then saw Tom Bowes speak (quite energetically!) about echolalia improving socialisation.
After a little break mixed with wandering around and having a little sit down and checking on my Sims (yes, I’ll admit now that The Sims FreePlay is my version of Minecraft – just yesterday I created a house to replicate the Morgendorffer family home from Daria – don’t judge me! 🙂 ), I then went to see a talk I was very much looking forward to – Autism and Girls, featuring the head teacher and students from Limpsfield Grange School. The girls who spoke (two current students in Y8 & Y9 and a former student now in college) did so unbelievably well… I could see they were anxious speaking in front of such a large crowd, but they handled it beautifully. It is so important for these girls to have a voice in the autism world because (as I’ve experienced first-hand) females have a harder time being taken seriously and need to feel valued and worthwhile. This school was featured in an ITV documentary last year [I quoted a poem from one of the students shown on the programme in my post titled Disclosure… and relief.] and I could see myself in several of the students there… like, different aspects appearing in different girls at varying intensities. Later on in the day, just before the show closed, I went up to the stall and spoke to the head teacher, congratulating her students on their job well done speaking in front of the audience today and thanking her for doing the documentary last year, explaining how it was broadcast not long after I had the realisation that Autism/Asperger’s seemed to make sense to explain why I’ve always felt awkward in myself my whole life and it supported me to request a diagnostic assessment. She was so lovely to speak to – I was a bit tearful because ALL THE EMOTIONS (and I was a very tired girl after a very long day) and she said that there were a few lovely women who came up to speak to her with similar stories, so I can imagine this has been a monumental and rewarding day for her and for the school. I wish there was provision local to where I live like Limpsfield Grange, because they do such great things for girls on the spectrum [and other needs too].
After that session was back to back sessions about autism equality in the workplace: removing barriers and challenging discrimination, which was quite interesting [I may write a separate blog from my notes on that one, which may help me at work]. Then was a session which was added late to the programme: Diagnosing Autism Spectrum Conditions in Adulthood, presented by a neurodevelopmental specialist from the South London and Maudsley NHS Foundation Trust. Let’s just say that it stirred up a lot of the still-raw emotions from the last two weeks.
After that session ended I had a 20 minute break until my next session and I went to speak to this specialist at the booth… aaaaaaaand became overcome with emotion [this was actually a couple hours before the emotional breakdown described above… conclusion: I do not function well on little sleep… I was verrrrry apologetic for being in a state]. We went and spoke outside for a few minutes and she was so lovely. I explained what happened between the two appointments and how I felt after and wrote to the assessors. [Update for you guys because I didn’t have time to blog about it last night, but I’ve had an email back and they have offered me a third appointment which will be with a psychiatrist, recommending that I bring Paul with me… but it’s not until 11th August – 8 weeks from yesterday. Not exactly great in terms of timescales, eh???? 😥 ] I asked what my options were, and I was advised to perhaps speak to Advocacy For All (as they have an autism-specific team) and go for the third appointment. If I still feel that I’ve not been given the fairest assessment, then I could request from my GP to be referred to their service, as it provides nationwide support (not exclusive to South London). I was relieved to know that I still had options through the NHS, as I just cannot afford to go for a private assessment. I reiterated that I only want a diagnosis for personal validation and to put me in a context for what I need to get by in the workplace – not for any untoward reasons (claiming benefits or anything).
After all that emotional deluge, I saw another talk about teaching autistic girls, this time from an autistic teacher – she was another adult woman with a diagnosis that, upon first seeing her speak, you would not have assumed she was on the spectrum. This, if anything, just reinforces my strong feeling that my assessors got it wrong and didn’t fully take the female element into consideration!! The final session I attended was called ‘Turning the Triad on its head’, but to be honest it just repeated a lot of the same things I’d heard during all of the sessions (focusing on strengths, not defining by difficulties, etc.).
The recurring theme throughout the day was: if you meet one person on the spectrum, you have met one person on the spectrum; no two people are the same!!
It’s now 9pm and I’m completely zonked. I had a lovely pizza for dinner at a little Italian wine bar while reading Harry Potter and the Prisoner of Azkaban on my Kindle (not my first time reading it) while it rained as I didn’t fancy a 20 minute walk to the hotel in the rain. Checked into my hotel room, had a shower, and started writing this! Now that my thoughts are well and truly decanted, I’m gonna climb into bed and hopefully fall asleep before 10pm. Day 2 tomorrow, and I will follow up with a similar analysis. 😉