Tuesday, 7 March 2017

RCGP Autism Clinical Priority celebration event speech

I was asked to do a short speech at a celebratory event for the Royal College of GPs in light of the Autism clinical priority coming to an end soon after 3 years. Dr Carole Buckley (RCGP Clinical Champion for Autism) and her colleagues from the RCGP spoke before me about some of the work the College has done and how the priority status has worked.


I've spent a lot of time over the past few years talking about being autistic, and feeling like I'm either preaching to the already converted or that I'm just running into a brick wall of ignorance and misunderstanding.

Over the past few years the support that has been visible for this priority and the Westminster Autism Commissions report into 'Access to Health Care' has been both heart-warming and reaffirming that it is all worth it, no matter what the cost.

And there will be a cost, everything costs!

But for me it's not money, it's energy, the reserves I have to draw upon to cope in the here and now.

The term 'Autism Fatigue' is still fairly unheard of, but it is real, and potentially damaging if not managed appropriately.

There are times I simply am so overwhelmed, so drained of energy from just keeping going, so bombarded by the sensory nature of the environment that I am in, that formulating thoughts into speech becomes near impossible.

As a result I can come out of a meeting with no knowledge of what was said, only a headache from the overly busy walls. Or leave a doctor's appointment that was for an earache with a prescription for antidepressants - again.

The trouble is that people look at me and other autistic adults who appear to be coping and don't see someone who needs help; don't see the struggles inside.

I show you what I want you to see; a confident, independent person who lives alone, works two part-time jobs, is a postgraduate student and a freelance autistic speaker, as well as following Saracens rugby club around the country each weekend!

I can't speak for all autistic people, and I would never try to claim to, we are all individuals with individual struggles. But I can say that the majority of us struggle to ask for help when we need it, and struggle even more to cope when we don't get it.

This priority is so important to us because it proves that we are not a 'forgotten' group, that there is recognition in the world of healthcare that we exist, that we need support and that we come in more shapes and sizes than just the little white boy seen on TV.

We need to feel safe going in to surgeries and hospitals; we need to know we're not going to be belittled by receptionists who don't understand our difficulties; that we're not going to be dismissed by GPs who aren't able to hear what we're trying to communicate.

We need to feel confidant that we're not going to get trapped on the mental health roundabout, being passed pillar to post until we reach crisis point.

The work being done through this priority is fantastic, and I can only hope that the continuing efforts of those involve bear fruit, not only for autistic people, but for all people. When you make the world more autistic friendly you are generally making it less confusing, less overwhelming, less complicated for everyone!

We're not asking for UN-reasonable adjustments or a complete restructure of the NHS, we're not even asking for all GPs to become autism specialists overnight! But we are asking for you to continue the good work you are already doing and to keep striving to improve where gaps in practise still exist.

None of us want to be a drain on public funds, none of us want to be unproductive members of society or have poor mental health and terrible wellbeing. We want to be respected and treated in ways appropriate to our needs and sensitivities.

This priority has done so much already in raising awareness of autism; in making sure that the doctors and physicians we have appointments with are trained to understand autism, that the non-clinical staff involved in our care have a better comprehension of our needs, that the environments we have to go in to access healthcare aren't going to make our health worse.

I'm incredibly grateful to the Royal College for making Autism a clinical priority these past three years; I hope that this is not the end, I hope that the work done so far has managed to reach people and had a positive impact on the lives of autistic people and those who care about them.

I know its had a positive impact on mine already.

Thank you.

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