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.
A very eloquent and well reasoned argument.
From my personal point of view, it is the provision of being able to make GP appointments in a way that is independent of the 8'o'clock phone scramble, that is really important. Preferably, autistic people should be able to make appointments by email.
I suspect that I am not the only autistic person who has been misdiagnosed due to high levels of anxiety when in a medical setting. My blood pressure goes sky high when my bp is being taken at the doctor's. After being prescribed various drugs that made me feel unwell, I worked out that I probably was reacting to the situation and that my bp was probably normal, when not in a state of high anxiety. I bought a bp monitor to use at home and I was correct. After some rather difficult self-assertion, I persuaded my GP practice to accept my own readings.
My blood pressure used to be OK, but when I got high blood pressure I discovered i cannot use those machines as they hurt me so bad that causes a spike and artificial high reading. Because of my physical disability my arms are too soft I think, when it is done by a human they don't need to pump it so hard. But I was just at my special dentist for a sedation prelim and my blood pressure was high again, but I think they should have done it earlier in the appt, and then also she did leave the pressure too high for too long and it started to hurt. I do not know a way round this pain problem! Maybe if they used my leg which actually has some muscle tone? I mean they would have to if I had no arms!
Yes, blood pressure tests always hurt me a lot. I have no idea whether an NT person would find that painful or not? Is it painful and too bad, it is for everyone, or is it a thing that needs to be understood as potentially a different experience for us, I wonder?
I'm thinking of getting a blood pressure monitor. My readings at the GP are always borderline high but my stress level is only marginally below panic when they're taken. One time it was much too high because the GP decided to bring up a triggering topic while the cuff was on my arm. Five minutes later, after changing the subject, she did it again and it was a lot better. At home I have symptoms of low blood pressure that improve when I dramatically increase salt intake.
If you could even fall asleep knowing that would happen! And I expect lack of sleep messes with blood pressure...
Yes, uncomfortable and at times painful and all for no gain. I cannot think that the readings during the night, after being shocked from sleep by a noisy machine suddenly squeezing your arm, can have been very useful, or representative.