Where Do You Want Autism Funding To Go?

I will take a look at the article. Thanks! Thinking about autism research reminded me of Liz Pellicano who is an autism researcher that I saw give a talk last year and that really impressed me- she is very keen to improve lives of autistic people. Her research team is composed of autistic and neurotypical individuals and they take into account the opinions of the autistic community and work closely with autistic individuals to make sure their work will be of use to help autistic people flourish . I was really impressed and think we need more people like her and funding needs to go towards their work. profiles.ucl.ac.uk/.../about

Hi neurokin! 

You may find this article about research and funding priorities for our autistic community interesting/relatable:

https://autistic-village.com/2021/11/02/why-bad-research-like-spectrum-10k-should-no-longer-get-the-green-light-and-what-should/

I absolutely agree with all of them obviously but I would particularly like to see as stated more emphasising on amplifying non speaking members of our autistic community and I would love to learn and see more attention given to the experience of being apraxic (the reason why many nonspeakers can’t reliably use speech).

What do you think about the priorities explained in the article?

I work in education and there is very little training (or time for said training), we are expected to be experts in everything by telepathy, I think. So more training absolutely. And education generally - I've still to find the most effective, succinct way of explaining what autism is (and isn't).

There needs to be much more funding for diagnosis and support of children. The situation is dire and schools, with the best will in the world (and mine is full of lovely people) are fearful places for autistic folk big and small.

I think funding should go towards 1) improving understanding of autism by providing better training for teachers, doctors, mental health professionals etc. Also other outreach work to increase awareness in the general population would be great. 2) in terms of research I think there needs to be a bigger focus on how to improve lives of autistic people - ie what adjustments are helpful? How can therapy be adjusted ? Etc. I think as part of this some common mental health issues experienced by autistic individuals such as autistic burnout need to be better defined and some guidelines need to put into place on how to recognise burnout and how to best help.
I also believe it is important to involve autistic researchers in autism research. 

A lot of research into autism is currently focused on genetics, neurodevelopmental mechanisms underlying autism etc. Whilst this can provide valuable information from a basic science perspective, it is unlikely to improve the lives of autistic people. Also in such research papers autism is often portrayed in a very negative way: eg differences are referred to as ‘defects’ ‘, it’s referred to as a ‘disorder’ etc. Also there is often mention of ‘treatment’ which is concerning. 

I’m autistic and I’m also a developmental neurobiologist so sadly I’m frequently faced with colleagues discussing autism in a very negative light. I don’t think this is meant to be hurtful to anyone (and most don’t know I’m autistic) but it comes from a severe lack of understanding of what being autistic means. 

I want autism funding to go to providing therapy and support for autistic people. By therapy I mean talking therapy not drugs. I think autistic people are prescribed enough drugs as it is. There needs to be more psychological therapy options.