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?
_____________________________________________________________________________________________
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.
…
Among the problems for me and many autistic people are:
- Sensory triggers in the medical environment or by medical staff handling my body which can result in shutdown (such that the person has trouble speaking to medical staff or absorbing anything said to them) or else meltdown, which can be misread as aggression or lack of co-operation when in fact it is distress.
- Coping with the chaos, unpredictability, constantly changing staff and crowds of other patients in some medical environments
- Surprise changes to what is expected (appointments, sudden bad news etc) can spike anxiety sky rocket high
- Sensory issues internal to the body such that significant anxiety is created, the individual cannot identify what their physical sensations are (problems in our interoception) or describe them in such a way as a doctor can understand (alexithymia). Our pain in particular can be experienced as extreme when their should be none or none when it should be significant and we may struggle to rate that on a scale.
- Medical staff misreading or not reading our body language/ facial expressions (or lack there of) making incorrect assumptions of our emotional attitudes or physical sensation
- The sensory impact of procedures and their aftermath can likewise cause immense distress and result in the individual not coping
- Many autistic people express themselves well in writing but struggle verbally, especially when under pressure, say in a doctor’s appointment, and find the telephone very difficult to use and yet many are still required to ring at 8 am to even make an appointment
…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.
….
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:
- My special care dentist has referred to the Learning Disability and Autism Team, who will not help because I do not also have a learning disability
- My GP and others have referred several times over to social services, who will not even take the referral and conduct an assessment, even though there is an “essential service” which I cannot access.
- Social services try telling us that mental health are responsible. They aren’t! A) Autism per se is not a mental health condition b) sensory and autistic communication issues cannot not be made better by psychological intervention c) mental health services do not provide advocacy or specialist nursing after medical appointments
- Voicability - are great. I have use them over another issue. But they provide advocacy only and to get that I would need to call, wait two weeks for someone to be available to help and meet with them before a doctor’s appointment could be arranged – not much help if I need to go into A&E or to a GP tomorrow. They would be unable to help following more extractions of my teeth.
- A PIP claim, with the idea that I could develop a relationship with a specialist care agency and buy in the carer support as and when needed. They rejected that and tell me that they fully accept I cannot access medical care and yet give me 0 points under the category “access to medical care” – but we all know that that agency is in place to stop anybody claiming anything!
- I have approached MIND CASS who are commissioned to provide adult autism support, but that is mostly courses for autistic adults and were clueless as to what to do in this case.
- Everyone says “go see your autism charity”. Pardon? As though I have a personal charity ready to jump to with advocacy and nursing every time I need a doctor?
…
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.
