Published on 12, July, 2020
Hello lovely community,
Some of you may well be bored of me twittering on about access to health care given the medical/body terrors which result from the sensory processing etc...lol
But it seems I have an appointment with my MP to discuss these frustrations and lack of commissioning for any kind of supports. Obviously, this is problem is of immediate personal import to me and I do seem to be a bit of an extreme case in finding this barrier, but I hear so many of you expressing at least some or even many of the issues I face too. Thanks guys, at least I know I am not alone! But I am also acutely aware that that being the case, I am not just presenting an argument for provisions for me, but for all autistic adults as I go into this.
I'll copy a precised version of the brief I sent to my MP's office below if anyone wants to be bothered reading through it, but in case there are essential points I have missed to some of you, my question to you is do you have needs I have not covered here? Do you think I am missing any essential points here? What would you like me to be saying for us all?
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I approach in desperation as there seems to be nothing commissioned anywhere to offer the necessary support to autistic adults to access health care. This is a complex topic, which I outline as briefly I am able.
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Among the problems for me and many autistic people are:
…Many reasonable adjustments can be made to mitigate some of the above but this depends on medical staff understanding the situation and the need that they are looking at and most do not because they have not had the training. Even high IQ autistic adults who can self-advocate in other situations may be deprived of an ability to communicate their need effectively or at all in these situations and are hardly at that point in a position to educate staff, who believe they are just being difficult. Organising and communicating to achieve adjustment adds significant executive strain on autistic people, who may struggle with this even when not under stress
It should be obvious that what is needed for me and for many other autistic people is significant practical support to make medical appointment where reasonable adjustments are planned for, during them to ensure staff understand that any behaviours of the shutdown/meltdown type or stimming are not a lack of co-operation or aggression aimed at anyone but the product of sever distress, ensure that the needs of the individual are communicated when they cannot do that for themselves and to ensure that the information given is taken down in writing and understood, and sometimes specialist nursing support afterwards to help cope with remaining difficulties due to the impact of procedures may be necessary.
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These services; … it seems exist ONLY for children and the intellectually impaired. The rest of us are left to go without any medical care or else continue to experience high levels of distress in medical contexts unsupported with further detriment to the little care we can receive. Recent research from the University of Brighton has indeed shown that these issues are costing the lives of autistic adults. Many are just not going to the doctor because they can’t even book an appointment.
In my case the following has been investigated:
To date, two social prescribers, my special care dentist and the OH lady from work and me are or have been running around these circles trying to find some avenue for support only to be passed from pillar to post, until we are all dizzy. The truth is nothing is commissioned to ensure that autistic adults can access healthcare if they do not have intellectual impairment. This needs a concrete permanent plan of some sort for each individual and none can be made by anyone.
So, my question to [MPS NAME] about what can be done and what can be commissioned is personal, but also more widely for the many other autistic people who are experiencing some or all of the problems I do in medical situations. Autistic people all have ‘spikey profiles’, we can experience sever impacts in some areas of life but cope albeit with more difficulty in others. I am so-called “high functioning”. The autistic community does not like or buy into functioning labels because they are misleading. I may have a job, a degree, a home and friends, but put me in a doctor’s surgery or a hospital and I can suddenly become every bit as so-called “low functioning” as those of my autistic siblings who have no oral language at all and/or intellectual difficulties.
All of that tbh. It doesn't help that we have to be vulnerable and touched by people who are basically strangers, it doesn't matter that they are medical professionals, I tend to find a Dr I like if I can and then stick to them like glue for all the procedures, and even then it is awful, you can't even just stare at the ceilings when in a hospital bed either because the flourescent lighting is hellish.
Indeed. Consistency in who we see is a biggie. If just one GP can get a handle on what our personal issues are and how we are affected so we aren't continually trying to explain ourselves and educating them at a point when we are feeling super vulnerable and anxious it would help.
That's not always easy to achieve.