I realised I can probably come across quite pessimistic on many issues relating to autistic people. I haven’t been around the autistic ‘scene’ long enough to say I am fed up with how we are ignored and marginalised by those claiming to help us but, nevertheless, I am angry about it.
I make no apology for this. I believe it is OK to be angry about injustices. And why shouldn’t we be angry when a lot of us have been metaphorically chucked in the boat of what most people would describe as a ‘serious’ condition and pushed out into the sea of a world which is alien to us with no paddle or sail to aid our journey? However, in an attempt to be more accommodating to the NTs involved in the autistic sphere who don’t seem to engage with the autistic way of telling it straight when we don’t like something, I am going to make a list of support, accommodations and services I would like which would help me have a better quality of life as an autistic person.
[NB. I am based in the UK so my comments reflect my experiences in this country.]
1. Individual post-diagnostic counselling/psychotherapy.
As someone who was diagnosed as an adult, I can confirm that there is a woeful lack of post-diagnostic support for autistic adults. What is usually offered (although not to me as I moved areas soon after diagnosis), is a six session group ‘counselling’ series. I say ‘counselling’ as that is how it was described to me by my psychiatrist but it appears to be more of a ‘course’ to me and seems to be described as such on the web link I’ve provided.
Let me explain my suggestion in more detail:
- Individual: Autistics are, in general, not great in group settings. Even most lay people know that problems with social interaction is part of the diagnostic criteria for autism. We also know that autism is a ‘spectrum’ condition. Every autistic person will have had different experiences leading them to diagnosis and will have strengths and weaknesses in different areas. Why then are we being offered a generic, group course to support us?
- Counselling/psychotheraphy: Personally I lean towards psychotherapy here. I have experience of both (paid for privately) and found psychotherapy to be more helpful to me, but I have included counselling as well as some might prefer a more outcomes based approach. I might be wrong here, but I think some of the support that is provided to autistic children is in the form of CBT. In my opinion, this is just a fancy name for ‘learning to mask’ and I don’t think there couldn’t be a worse form of ‘support’ for autistic people. Until we have properly studied the long term effects of masking on autistic people throughout their life-spans I don’t think we should be recommending it to children as a support system.
2. Explanatory Guides/Courses to the Neurotypical
Birthdays, weddings, baby showers, pub socials, university life, house purchase (actually I think that one could do with explaining to most NTs too), office chit-chat, meeting new people, using public transport, dinner invitations at other people’s houses… I could go on.
NT life is a dark art to autistic people. You think the procedure for any of the above events is obvious/natural, I tell you it is not. It has taken me 28 years to figure out I’m supposed to take presents to birthday events or offer to bring something if someone invites me round for a meal. And most of the time my executive function issues prevent me from actually achieving either of these things anyway.
I’m not saying we would use these courses to ‘teach’ autistic people how to act at these events, just to inform us of the etiquette. Let us make our own decisions about what actions we can manage and what appear to much effort, or too ridiculous, to bother with.
3. A big list of all Workplace Accommodations which have been successful for autistic people
There are lists out there, but they are disparate and limited. Give me a list of everything that has worked for any autistic person in any job and let me pick and choose.
4. An Annual GP Check-up
I am hopeless at going to the GP for anything. I have been stung many times in the past and, to be honest, I don’t think any GP will believe me about anything ever again. I have many ailments which have been hanging round for 5… 8… 10 years now which could be serious, I don’t know. I have been to the GP with most of them at one time or another but I was fobbed off and haven’t been back since. I don’t think I am alone in this in the autistic community.
Obviously, it would be best if we had confidence in the system enough to go to the GP and know we would be believed but, until that trust is rebuilt, I think a 30 min (?) appointment to try and catch all these issues in one go would be great.
5. An Autistic Retreat Centre
Autistic people need time out once in a while to regroup. It would be great to have this facility available to us no matter how ‘high’ or ‘low’ functioning we appear to be to the outside world. Living in a NT is draining for any autistic person we need to acknowledge this.
That’s all for now. I might continue at a later date.
If you are autistic (based in the UK or elsewhere), please feel free to add your suggestions or comments below. This is list is just from the top of my head on one day, I am open to suggestions of ways my ideas might be altered to reflect more people’s needs. I aim to start collating ideas on a feature page on this blog. Who knows, maybe someone in power will notice and/or care enough to do something?!