Autism : the thorny issue of Consent

As I’ve mentioned before, Ian isn’t the ‘may have trouble making friends’ kind of autistic, or the ‘sure, he’s a bit antisocial but god love him, he’ll be okay’ kind of autistic.

Ian is the ‘will never be able to cross the street alone‘ kind of autistic. The ‘hasn’t got a clue what day of the week this is, let alone what year’ kind.

Very autistic.

Profoundly so.

Not stupid, though. There’s a part of Ian’s brain that fires on so many cylinders it would take your breath away, and is capable of loads of very, VERY clever things.

But other areas, specifically the ones we need to function in society … those, not so much.

And now there’s COVID-19, and vaccinations, and the need for consent. Consent from Ian, because in terms of the Law (The Assisted Decision-Making (Capacity) Act, 2015) we can’t make the decision for him.

https://inclusionireland.ie/assisted-decision-making/

Ian has to give consent for himself. And I understand why that is. I know that there have been horrendous abuses in the past by people taking away other people’s consent, acting on their behalf, or being their voice – when they may still have had one of their own. I get it. Truly, I do.

But asking Ian to consent to a medical procedure is impossible. Because he doesn’t grasp the concept of what he would be consenting to, and he never will.

Am I doing him a disservice by saying that? I don’t think I am. Ian is many wonderful things, but aware of the world around him he is not.

He does not have ‘capacity’ –

“Capacity refers to an assessment of the individual’s psychological abilities to form rational decisions, specifically the individual’s ability to understand, appreciate, and manipulate information and form rational decisions.”

(https://www.crisisprevention.com/Blog/Using-Functional-Assessments-to-Determine-Mental-C )

Section 3 of the Assisted Decision-Making (Capacity) Act 2015 says —

3. (1) Subject to subsections (2) to (6), for the purposes of this Act, a person’s capacity shall be assessed on the basis of his or her ability to understand, at the time that a decision is to be made, the nature and consequences of the decision to be made by him or her in the context of the available choices at that time.

(2) A person lacks the capacity to make a decision if he or she is unable-

(a) to understand the information relevant to the decision,

(b) to retain that information long enough to make a voluntary choice,

(c) to use or weigh that information as part of the process of making the decision, or

(http://www.irishstatutebook.ie/eli/2015/act/64/section/3/enacted/en/index.html)

I have spoken to Ian about the situation. Of course I have.

“People are getting sick, and doctors are trying to stop it …” (Ian understands ‘sick’, ‘doctor’, and ‘stop it’) “… and so you have to have a vaccination.”

I say the word twice, and Ian repeats it.

“A doctor will – ” and here my brain leaps ahead with ‘stab you with a needle and it will hurt’, so I take a breath and measure my words again. “A doctor will give you an injection here (I touch Ian’s arm) and then it will all be done.”

I smile at him. I know Ian doesn’t understand the why’s or wherefore’s, but I hope that something will percolate through his brain. Perhaps mummy’s reassuring smile …

So. Paging, paging, paging through all these reams of forms that have been presented to us, with all those pictures that explain nothing to Ian, until finally, we find a section, almost hidden at the back – Aha! Section C.

Finally, somewhere for us to sign on his behalf. Because, in the Act, the important words are “everyone is presumed to be able … unless the opposite is shown”. And in Ian’s case, it most definitely is.

Tuesday, 11.45. That’s when it’s supposed to happen.

Of course, the first vaccination will likely be no problem at all, but I wonder if we’ll get him to sit for a second shot when he knows what to expect.

Think of us …..

5 thoughts on “Autism : the thorny issue of Consent

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