Coming over all political

January has been rather hectic with autism stuff. I attended two meetings, one by Cambridgeshire County Council and one by an organisation called “Speak up spectrum” which is supported by Voice Ability. The Council meeting was quite intense and had important people from around the county. The main thrust was getting people into work and sustaining work. I feel in some ways they were missing the point. Many autistic people struggle to get through a day without having to work as well. I would love to work but find it hard to cope with the basics of life without having a job too. I just feel a broader outlook from the powers that be might be better to improve quality of life for some of us.  At “Speak up spectrum” we too touched on employment but also discussed our campaign to find good social spaces like bowling or the pub. Our leader had also been to London to discuss autism with MPs etc so we had feedback from there. As you can imagine I found this all rather stressful but I feel  it is important in our quest for better understanding for autism (our “speak up spectrum” leader is a woman).

Mum went to a conference on female autism in London called “the Big Shout”. She found it very useful especially listening to some girls from Limpsfield school. She discovered, which may seem strange at such a late date, that it is typical for women and girls on the spectrum to suffer from overwhelming chronic anxiety and to self harm and have suicidal ideas like me. Now I’ve had chronic anxiety all my life and my parents have tried everything but hearing it enabled both my mother and me to accept it and feel “normal”. Over the years my parents have realised that my anxiety cannot be helped by reassurance and ordinary ways of coping. They and my carers praise me for the good things I do in a day which makes me feel I have achieved something. I also reward myself every few months with a cd or two.

I challenged myself the other day by going out for Sunday lunch. I had roast beef, it was very nice but very challenging. I get so worried I will choke and vomit, it is really scary. I will also go out when my niece comes for half term. I do find children a bit of a nightmare. I have no clue what to do with them but I’m going with her to a golf lesson and bowling so hopefully all will be ok. She’s very lively!!! I’m still on the golf course most weeks trying desperately to hit a good shot. Sometimes I do, but others end up in the lake. I do enjoy it but I get so frightened beforehand that my bowels won’t hold out or I’ll have a panic attack in the middle of the course. Anyway enough about my golf woes. I struggle on and Tilly goes from strength to strength.

When the wheels started to fall off

At the moment I’m reading “The Hitchhikers Guide to the Galaxy” which has me musing on the meaning of life. One thing I often ask myself is how different life might have been had I been diagnosed earlier. The signs were there but they probably thought I was just a low achiever. Why people didn’t think “what’s up” when it was clear I was struggling and being a nuisance in class. I used to chat incessantly, sing and copy the person next to me. I was utterly lost. I got diagnosed with Dyslexia at 8 and everyone thought that would be the answer. But even with extra help I was still way behind my peers. I’m measured as having a pretty high IQ so you can imagine my humiliation at being in remedial reading. Most of my contemporaries treated me as being a few sandwiches short of a picnic. My favourite thing to do was play. Me and my brother played huge games with Playmobil which would fill the living room floor. We had friends in the street so we used to play games with them. I loved long summer holiday nights with about ten of us playing baseball and talking. I wish those nights could have lasted forever but suddenly my friends didn’t want to play or “hang”. One told me we were older now we didn’t play games. I was gutted everyone had grown up but me!

Participate in research by the Autism Research Centre

The aim of the ARC is to understand the biomedical causes of autism spectrum conditions, and develop new and validated methods for assessment and intervention.

They are currently interested in recruiting additional participants for their research database.
Registration is completed online and those who choose to sign up will have access to many different studies both online and in person. They are looking for adults (over 16 years old) diagnosed with autism spectrum conditions or parents of children (under 16 years old) with a diagnosis on the autism spectrum.

Additional information

Source NAS Cambridge

A New Year…

A New Year and Tilly marches on. The New Year is hopefully going to be good for girls with Autism, although I think it will be challenging too. Tilly has led us all on this journey and where she takes us next I can’t say but I hope above all it will be positive. Firstly I would like to introduce myself – My name is Rachel and I am the real Tilly! Mum says the name just popped up when she started to write! Where did that come from!

Tilly’s story is my story, but with one big difference – I wasn’t diagnosed with autism until I was 33 years old. I’m very happy for my mum to write this book and hope that in writing this blog people can read about my life and relate to it and not feel so alone. I’m not going to lie. Life has been really tough with some very low lows but it seems really important that through my telling my story other girls will have better chances than I’ve had.

I’ve enjoyed being a “consultant” on the book and am sort of flattered that I’m the subject of a book. Mum says the book came about when one night she sat down to write an angry letter – not sure who to, just someone out there! – about my life and all the missed opportunities to properly diagnose what was wrong with me. But the letter turned instead into the narrative that would be “Tilly”. I sometimes get very angry with the world about people not knowing what is wrong with me and their inability to make me better. I often fantasize that I have my own unique disorder – Batesian syndrome – and that someone famous will want to study me and can make it all better so I can have a normal life. I often feel my problems are a punishment for me being a bad person and that the whole thing is my fault. On occasion it feels like I let all the bad stuff in and now I can’t control it. I have stated all this and more to people who are supposed to know but until the suggestion of autism came about they all seemed not to have a clue.  I don’t blame them, I just think I’m more intelligent than them or something. I feel like I gave them all the pieces but they failed to put them together.

‘The Big Shout’ Conference

Girls on the Autism Spectrum Conference
Organised by the NAHT

Friday 27th January 2017 at The Grand Connaught Rooms, London

This conference aims to
  • provide an update on the work of the Girls with Autism forum
  • gain an insight from the perspective of girls on the Autism Spectrum
  • share effective practice emerging in the field
  • prepare a ‘Call for Action’ that highlights future areas for development
Who should attend

School leaders and SENCOs from Primary, Secondary and Special schools and academies; clinical and educational psychologists; neuroscientists, health professionals, including speech and language therapists, occupational therapists, psychiatrists and CAMHS teams; LA officers with responsibility for SEND/ ASD and those working in social care; parents, carers and adults with autism. Health contacts, LGA named links for clinical leads.

Event website

Late diagnosis and misdiagnosis of women and girls with Aspergers

Late diagnosis and misdiagnosis of women and girls with Asperger Syndrome has been receiving more publicity in recent years but the data is scattered and limited resources mean that some women don’t get the support they need. Jane, a Woman’s Hour listener, got in touch and is joined by Dr Judith Gould, an expert in autism spectrum disorder.

From BBC’s Radio 4’s Women’s Hour
Listen online

The Book Launch

It’s here!! Tilly has arrived!! The book was published last week. I have been so nervous wondering what people will think. But so far so good. People who have read it keep saying what a good and important book it is. I can’t believe my story is helping so many. The big nerves, however, was saved for the launch event in Cambridge. We booked out a bookshop in Cambridge and we had 80 people there.

There were friends from parts of the UK, psychologists, teachers, my carers and people on the spectrum. I don’t think I’ve felt so sick in a whole room full of people who want to talk to me. Usually at this kind of thing I feel a bit of a gooseberry but here I was the centre of attention. My Mum gave a talk thanking people in particular the illustrator who has done so well bringing Tilly to life. And me! We also had a few words from a Consultant Psychologist who my Mum’s known for ages. My Mum was close to tears but then so was most of the room. After the speeches I sat down to sign someone’s book, looked up and there was a huge queue who wanted their book signed by little me. I must have sat for half an hour signing. I felt like “One Direction”! We sold all the books in stock. What a night! My fifteen minutes of fame! I’m just so glad that people are enthusiastic about it and I’ve been told that schools are using it already and two girls who came with their Mums loved it. I just want to say how pleased I am by everyone’s reaction. Here’s to girls and women on the spectrum the world over – small steps to get the recognition we deserve.