Wednesday 1 November 2017

What do we want healthcare providers to know about autism, autistics and disability?

This entry has been prompted by a post over on Autism Women's Network, where they have requested feedback and input in order to create a resource for healthcare providers on "[W]hat YOU wish your healthcare provider* knew about autism and treating autistics and disabled folks. 

 *Healthcare provider means anyone that's part of getting healthcare so doctors, nurses, reception/front desk, pharmacists, physical therapists, chiropractors, etc".

It's something I have previously thought about doing a blog post on, so now seems like an excellent time to do so!


Here's what I hope is a fairly comprehensive list:
  • Give me everything in writing (a lot of us have trouble with information given to us solely through speech - processing and retaining) so I can re-read it if I can't remember something, if I need more time to process it to properly understand it, and so that I have something I can refer to at a later date. It's also useful to have it for the future, because communication is more difficult when we're ill, in pain, overloaded, etc, so articulating things is much more challenging; having something written down enables us to just hand it over for the other person to read. And I can give it to a family member/friend/whoever's with me.
  • Talk to me like an adult, not a baby - I am perfectly competent, and competence should be presumed (if a person is unable to comprehend or deal with something, they're likely to have a carer or support worker). Presume competence in nonspeaking autistics and disabled people, too. Also, unless the carer/support worker specifically states that you talk to them rather than the patient, talk to the patient! (This is part of the presuming-competence concept.)
  • Allow me enough time to process what has been said to me and to formulate a response. If I don't respond immediately, stay quiet and give me that time to think/process/formulate. If you interrupt me it will throw me off and I lose my thoughts and comprehension, so we'll have to start all over again, which I'm sure neither of us wants. If I need something repeated, I will say so.
  • Be patient if we are struggling to speak, don't talk over us or finish our sentences for us, and give as much time as we need to speak. Many autistics have difficulties with speech, including quite a few of my friends. For some people it's a muscle/brain co-ordination problem, for others it's anxiety- and stress-related. I'm generally OK on this front but when I'm tired, ill, stressed, in more pain than usual, have brain fog and/or am struggling with sensory overload, I do struggle with speech. Yes, it can be tempting to try to hurry us along, particularly if things are busy, but please afford us some respect. What we have to say is just as important as everyone else. If you attempt to hurry us, we feel under pressure, which causes stress, which exacerbates any speech issues, which turns into a downward spiral that distresses us - and you! - and could ultimately lead to a meltdown. Please don't guess what we're saying and speak over us or try to finish our sentences for us - it makes us feel undermined and not listened to. I've known some autistics to get so frustrated by this (not necessarily in a clinical setting; this happens in all walks of life) that they've just walked out. In a clinical setting it's really important that we are allowed to communicate everything, because that will help you to do your job to the best of your ability and help us as much as possible.
  • Alternative forms of communication are just as valid as speech. Not all autistics use speech, so treat my nonspeaking counterparts with just as much respect as you would a speaking autistic or an NT person. AAC, FC, etc are perfectly acceptable.
  • Provide us with a quiet, more-dimly-lit space. A lot of healthcare spaces (hospitals, pharmacies, clinics, etc) are unbearably bright because of white walls and fluorescent lights, and they can overwhelm us and be physically painful. The flickering of fluorescent lights is really distracting and uncomfortable, and the buzzing noise they make is irritating to the point where it can contribute to a meltdown, especially if everything else is a bit too much for us. Such places are usually busy, bustling with many people, which again can overwhelm us, and I find it even more so now I'm a wheelchair user, because everyone else is that much higher than me and I feel surrounded and trapped (and also it's more likely that people will inadvertently bump into me because their eyeline is much higher than my head). And if somewhere is busy, chances are there will be many different noises, which can be painful and overloading for us. I find that multiple noises tend to merge together in my ears and head to become one big, incomprehensible racket that's completely intolerable and can trigger a full meltdown. Please be mindful of backround noises, particularly music - a lot of it can be quite tinny and irritating for hypersensitive ears.
  • Ensure that toilets, especially disabled/accessible ones, are clearly marked and signposted, and kept in use and available whenever possible. Many disabled people have bladder and/or bowel issues, whether physiological or anxiety-related, so this is really important to us! And while I'm on that subject, please don't use the disabled toilet as a storage cupboard!!! It's less likely to happen in healthcare settings than elsewhere (pubs can be particularly bad for this) but it can and does occur. This is not acceptable, because unnecessary items take up space that can prohibit a wheelchair and/or a carer fitting into the toilet, thus rendering it inaccessible, which rather defeats the purpose of it. Additionally, please provide sanitary bins! The number of places that seem to forget that disabled women of childbearing age menstruate just like their able-bodied counterparts is staggering. When I did my MA, there was one toilet I used every week that never had a sanitary bin provided in it, despite my reporting the absence and requesting the provision of one every single week. On 3 separate occasions I had to leave a used tampon on the sink because there was nowhere else to put it; was I supposed to roll down the corridor with it on my lap to dispose of it in the inaccessible female toilets?! I really disliked having to do that but I had no other option.
  • Having a lower section for counters. So many clinical places have counters and desks that are level with my forehead and no lower option, which makes it quite difficult to effectively interact with people on the other side of it when you're a wheelchair user. It also makes it hard to exchange, sign, etc paperwork, especially when someone's ill because a lot of issues can affect people's ability to raise their arms. Mine certainly do.
  • Learn some basic signs. It makes a world of difference for Deaf people and quite a few autistics use sign language or Makaton as well. For me it would be BSL (British Sign Language) but obviously it depends where in the world you are. Having a chart with key signs by the desk is also a handy prompt, particularly if you don't use it very often. I've seen several shops with them here in Exeter and it would be brilliant if this became a standard thing.
  • Sometimes we struggle to identify our exact issue and the location of our issue. Many autistics have trouble pinpointing where there's something wrong or what it is. Please be patient with us and listen to what we are saying, but also I would encourage you to observe our bodies, how we move them, etc, because that can give you clues and information as to where the problem is. It can be helpful to ask about specific locations, such as, "Is the pain in your head? Is it in your left arm?" etc, or specific problems, eg, "Are things blurry? Do you feel sick?"
  • Be specific and precise, and as a general rule stick to literal, and avoid metaphorical, language. Clarity, specifics and precision are good for autistics, as well as other people with a variety of disabilities. Vagueness is difficult for us to understand and makes it hard to follow what your point is. It also makes us feel intellectually inferior because NT and autistic conventions are very different, so we may not grasp the meaning or conversation thread of intangible things.
  • Stimming is perfectly normal for us and intervention is only warranted if we are causing harm to ourselves/we are in danger. It's part of the autistic way, and however weird it may look to you and other people, there is nothing wrong with it, we may need to do it to regulate our body/our brain-body connection, to process sensations, to calm ourselves, to express emotions, to name some.
  • Sensory and physical health issues can be problematic when it comes to clinical involvement. Many of us are either hyper- or hypo-sensitive to touch and physiological input, so please check with us (when possible) before making physical contact with us. Many disabled people have difficulties with pain, muscle tightness or laxness, hypermobility or other physical dysfunctions. It's always best to check before touching, to prevent surprises, unnecessary pain, damage or violent reactions. I'm very hypersensitive to touch and because I have fibromyalgia, I have tender spots on my body where even a very light touch can cause me agony and physical manipulation of limbs is risky.

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