Where Do You Want Autism Funding To Go?

Here's a video I made about The Autism Investor Summit 

youtu.be/-UbsdA9a71Q

Parents
  • 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. 

Reply
  • 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. 

Children
  • 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.