What can you do while waiting for an assessment?
It seems most people, be that child, adolescent or adult, experience some sort of delay in accessing an Autism assessment. In the UK, this seems to be very much a postcode lottery, a problem further exacerbated by some gatekeepers who are not up to speed with the wide variation in Autistic experiences. The wait can be years rather than months and few people would dispute that this is totally unacceptable.
So what can we do to help ourselves in the meantime? The Internet is a powerful resource and can lead to lots of useful articles and forums, but these can also be harmful derived as many are from the medical model of Autism, which is deficit led. Forums are a good place to find other neurodivergent people to share ideas with and ask questions. But, there are a few practical things which could prove useful immediately. For example:
Revisit labels – as Autistic people, most of us will have had certain of our habits and behaviours labelled by other people. These labels are not always positive or helpful:
(A) He monologues about the same thing day-in-day-out.
(B) She’s so bossy, it has to be her way all the time.
(C) She’s really shy, it’s so hard to get even a hello out of her.
(D) He’s really rude, just so blunt in everything he says.
Revisiting these with a neurodivergence hat on can lead to great insights, and an alternative, more positive spin:
(A) For some of us, sharing our special interest with you can be our way of connecting. For others it is our safe zone, a way we can self-regulate and is therefore important to our well-being.
(B) When we understand our sensory triggers we might, in order to avoid overload, attempt to manage how, where and when we do things to avoid being triggered.
(C) The challenges of social interaction can feel overwhelming for some of us, to the extent we prefer not to engage if we can help it.
(D) Some Autistic people prefer an honest and straightforward communication style. If you ask for our opinion, there is a good chance we will take you at your word and give our opinion, totally unfiltered.
Starting to look at your own labels right now can be one small step in the process of healing.
Learning Energy Accounting – as Autistic people living in a world not designed for our way of thinking and experiencing the world, day-to-day life can be exhausting. In beginning to recognise those parts of our day which drain our energy, we can start to work out ways to mitigate this. This might include accommodations, but it might also include building in activities and behaviours which re-energise us – stimming is a classic example of this.
In The Undercover Autistic: Navigating Your Diagnosis, Leigh East devotes large parts of her book to talking about just these sorts of approaches. Unsupported following her own diagnosis, she eventually wrote about all the wonderful techniques and concepts she came across in her research, many of which she implemented for herself and her family as they waited for post diagnostic support.