Tania Melnyczuk
Diary

My Diary is my catch-all category for posts that don't fit neatly into one of the other categories.

Being believed when you’re autistic and sick

Being believed when you’re autistic and sick

Content warning: Sarcasm Level 10

There are a million billion gazillion diseases and disorders which occur more often in autistic people than in the general population: mast cell disorders, ion channel diseases, mitochondrial diseases, connective tissue disorders and bla bla bla fishpaste. Lots and lots and lots and lots of researchers say so.

OK, so here’s the catch:

Some of these are… oh dear… mental disorders.

When you have a mental disorder, then in the eyes of most medical people, you become immune to all those diseases. In fact, in the eyes of the professional treating you, there is nooo link whatsoever between mental illness and anything else that may be wrong in your body, in spite of what medical research may say. Thyroid? Nah. Gut issues? Definitely not. Ion channels? Uhhh… if your doctor can’t remember what they learned about that in medical school, then no. So, when you repeatedly go to the doctor or end up in the emergency room crying or in a meltdown with symptoms of any of those diseases I mentioned above, you will typically be seen as malingering, somaticising or just being a good old-fashioned hypochondriac — or if it’s more dramatic, then ‘presenting with a conversion disorder’. In plain language, it means you are Making It All Up Because You Are Mad.

Because that is what mad people do: they imagine things. All these diseases may be real, they may be common in autistic people, but you can’t possibly have any of them, because you have a mental disorder; and besides, you’re autistic. See, although autistics allegedly don’t have an imagination, autistics also simply aren’t trustworthy, apparently, and they don’t know anything about themselves. Oh, and also, because this Medical Magician doesn’t know that these things are common in autistic people, they therefore are not common in autistic people. Whatever your doctor doesn’t know about, simply isn’t true and doesn’t exist.

TIP: Don’t bring along anything that you found in PubMed, because “The Patient Used Google” loses you 40,000 Credibility Points. Doctors are overworked. They don’t have time to read medical research, so patients shouldn’t read it either and try to confuse them.

Also bear in mind that if you have a meltdown, your chances of getting help with any of these diseases drops dramatically. Because people who are really sick don’t have meltdowns, they behave like normal healthy people.

Paradoxically, if you do your level best to behave like a normal healthy person, you won’t get help either, because you look too normal and healthy.

So, here’s my question to doctors and other medical professionals who view behaviour as their primary diagnostic dipstick, and who won’t run a blood test, a urine test or any kind of freaking relevant test unless you pass the behavioural dipstick test: What IS this behaviour that autistic people must have before you will take their health issues seriously? Can you please point all autistic patients to this Medically Credible Behaviour Training so that they can present it to you before their limbs fall off from EDS, their breathing stops from hypokalaemic periodic paralysis, and their livers give in from choline deficiency?

Caregiver abuse takes many forms

Today’s artefact is by non-speaking autistic blogger Mel Baggs. As a survivor of many years of abuse, Mel talks about the many forms of caregiver abuse experienced by people with high support needs.

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