Last week I asked for questions on my Instagram for an Ask Me Anything blog post. Here are the questions and my responses!
What is one of the best things your parents did to help? Activities? Advocacy? Time to yourself?
One of the best things that my mum has done, throughout my life, is advocate for me to make sure that I was getting the support I needed. Even though I didn’t receive my diagnosis until I was 27, I still struggled at school and my mum always tried to make sure that I was getting the help I needed. Whilst I am now a lot better at advocating for myself, she does still support me when things are difficult and I need someone to speak on my behalf.
What Autism Charities would you recommend?
For me, the best autism charities are the ones that have autistic people involved in their work. Unfortunately this does not include many charities!
I do recommend the National Autistic Society in terms of the information that they provide on their website, Ambitious About Autism for information on children and young people and Leeds Autism Aim have some fantastic resources for self-advocacy. Autism Charities is an area that I am still looking into myself so I hope to be able to list more in the future.
What do you find most challenging?
The things I find most challenging change depending on the environment that I am in. Overall, I would say that I find being made to feel like a burden when I ask for adjustments to be made so that I can access the support I need. Too often, especially in the case of medical professionals, the reason for these adjustments is not understood which makes it very challenging for me to access the service.
What would be some of the support groups/activities autistic adults might find helpful?
One of the key support groups I believe would be to speak to other autistic adults about the struggles that we experience. There are many activities that we would like to take part in but they are not always accessible to us so activities with adjustments would be really helpful. These could link to special interests or known self-care strategies such as music, walking or yoga.
What would you change about your diagnostic assessment, if anything?
Due to receiving my diagnosis during lockdown, it was very different to the experience that had been originally described to me. There are areas that I would like to change including being kept up to date with what was going on as there were long gaps with lots of uncertainty. The biggest thing I would change was the way in which my diagnosis was delivered. After months of waiting, the decision was delivered in a really blunt way which I feel could have been told to me in a much more understanding way.
Better ways therapists and parents can support autistic children, especially those whom have a lower developmental age. Example: those who struggle with communication, learning new skills and emotional intelligence?
I always unsure about assigning developmental labels as these can sometimes do more harm than good so that would be one way to support autistic children better. The best ways to support involve tailoring the support to that child so taking into account any sensory needs, allow other methods of communication including writing/drawing, use written instructions and encourage them to talk about emotions by modelling different emotions to them.