I am a self advocate, but I need your advocacy too.

Retha Faurie is a blogger, sometimes-writer of Sunday school lessons, and a bored admin clerk. She was diagnosed with Aspergers at age 35. She would love to get any job freelance or full-time – in writing instead.


 

They say I am an autism self advocate. They may be right: After all, I write articles about how autism has positive aspects too, how neorotypicals (non-autistic people) should think about Autistics, how autism organizations could better use our self advocacy, and even speculations on how autism is in God’s image.

I even occasionally answer a question or two, among the other autistic answerers, on a Facebook group called “Ask me I am autistic.” I am of the opinion that churches should not judge people for being different. At least one mother with an autistic daughter has more dreams for her child because I manage to live alone and go to work.

All this makes me, in the words of those who know of it, a self- advocate: I am on the autism spectrum and speak about autism.  Some may think of this as sufficient: Retha is one of the priviledged minority of autistics who can speak. She can even type a blog entry. Retha do not need any help. But people like me still needs help.

You see, I am totally unable to actually advocate for myself.

Here is one story, from a previous work situation:

I was a lowly store guard, standing around in a shop and looking if customers/ staff steal. (A part of the reason many autistics struggle to get jobs, and when employed often have a lowly work history which is below their intellectual and educational capacity is their inability to sound intelligent in a job interview with strangers.) The boss, as in the owner of several stores, told me that my job is to be a guard, and I should do it all the time. If I do anything else besides concentrating on potential thieves, I am slacking off. The floor manager had other ideas, and often told me to do things like unpacking boxes. I tried telling her that this is not what the boss said, but somehow in my tone of voice the smallest disagreement seemingly sound argumentative to bosses. And the most honest statement (autistics are very honest) are often taken as lies.

So, with the floor manager in the store and the owner not, I obeyed the floor manager. The boss came in, and saw me unpacking boxes. I am in trouble. When people react with anger I sometimes completely lose my voice, and I do not explain that disobeying the floor manager will also get me in trouble.

The same thing happens again: I do something the floor manager made me do, and the boss comes in. Even though I explain it this time, I make nothing any better. The floor manager, of course, say she did not, and somehow I as an Aspie always sounds less believable to NTs (neurotypicals/ non-autistic people) than other NTs do.

I later lost that job: The boss started to believe negative things about me, and I was unable to convince him otherwise. I know I can be convincing: My online reasoning is great, and I can make a pretty fine prepared speech. But in day-to-day conversation, people rather believe others like themselves.

For that reason, people like me could often – at work, at church, and in social settings – do with a trusted friend who can help them represent themselves. We have things we want others to know of us. We need to know the things others say about us, to respond to it. We need a friend to help us, to believe us, to sometimes act as intermediary, explaining us to others or others to us.

Often, people like me can also use help with keeping everything together, with sorting and prioritising. For example, a few days ago I thought I will have spare time at work to get busy with this article (I did) so I brought along my laptop. Oops. I forgot the power cable, and this old laptop only works about 20 minutes from the battery.

Recently, a my monthly medicine prescription of mine ran out on Sunday. I said I will refill the prescription the next day. (I do not have a car, the shopping district and pharmacy is close to my work and far from my home, so it is more convenient that way.)  But on Monday I forgot my wallet, and I keep my medical card in there. I remembered to bring along my wallet to work on Tuesday. Oops.  At work, I noticed the card is not in the wallet – I forgot it at home. I wrote down that I should put the card in the wallet when I get at home again, and actually remembered to look at the note and do it that evening. On Wednesday I had the wallet, card and all, at work, but forgot to go to the pharmacy.

What kind of help can people like us use?

The most important is advocacy – someone at our work and in our social world who helps us to explain why we do what we do (after discussing it with us at a time when we can explain, of course).

Sometimes, just a basic check-up to ask us if we remembered everything could help: Is this account and that account paid? Did you remember to buy food, do you remember to eat? If we have some handicap that makes it hard to get around (personally, I cannot drive), do we need practical help? Which things on our to-do lists are we trying to get done first, how is our priorities and planning? Please invite us to social events – we can get lonely -, but also understand if we refuse more often than not.

But more important than practical help is a willingness to understand that the NT way of doing things are not the only way, that people who are different still have a meaningful place in society. To help others to understand us, we need you as a caring neurotypical to advocate for us. You see, neurotypicals will rather believe a neurotypical advocate than an  autistic one.


 

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