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.


 

SAACAPAP Regional IMFAR Conference

This year, some of the Autism South Africa staff were priveldged enough to attend the Regional IMFAR conference held at Spier Wine Estate in Stellenbosch. The Regional IMFAR conferences are starting to be held in a variety of locations throughout the world, and South Africa was lucky enough to have been the latest venue. IMFAR stands for International Meeting For Autism Research, and the focus this year was on Autism in Africa.

Speakers included many specialists in their field from Europe, America and also Africa, where there are many people doing their best and researching various topics in the field of autism.

For many, however the highlight happened even before the official opening of the conference. A stakeholder engagement was held – at this engagement people from all walks of life were invited to discuss a way forward for the autism community in South Africa. We want to bridge the gaps between the neurotypical population and the autistic population in order to formulate a way forward. There were many recommendations and suggestions given to try and work out a way forward – one that will promote equality for the autistic community.

Equality within the community also means looking at research, and what research is currently being done throughout the world. There is still big focus on treatments and management of Autism, but there is also a shift towards autism being seen as a neurodivergence as opposed to a disorder. This means, quite simply, that people with autism think differently! There are certainly elements that we see commonly co-occurring with autism that would be classified as a disorder (e.g. epilepsy, impaired cognitive functioning, depression), this was highlighted by Simon Baron-Cohen (for many in the autism profession, seeing and listening to Simon Baron-Cohen, the moment was akin to meeting a celebrity from Hollywood). Baron-Cohen explains it as “But, when we examine the cognition and biology of autism, arguably what we see is not evidence of dysfunction but rather evidence of difference”.

And so going forward, we would like to ask you to start seeing autism as a different way of thinking and perceiving and not just a disorder!

Boy, aged 12, secures bus for our school

When Mark Hopkins (12) visited the Johannesburg Hospital School for Autism in Braamfontein as part of a volunteer group, he was struck by the desire to help even further.

Mark Hopkins, was able to secure a bus for the Johannesburg School for Autism

The school offers cutting-edge education to severely autistic children but must make every cent count, as it is a government school with a large proportion of learners from grant-dependent families. Mark, who is known as a compassionate child, had previously encountered autistic people and understands the condition well.

“Life is very difficult for autistic children because they struggle to communicate, make friends and be understood,” he says. “They need to be treated with gentleness, and with kindness.”

Mark was visiting as part of a volunteer group from his own school Bellavista in Birdhaven, Johannesburg. As part of this own school’s charity drive, the volunteer group had packed food hampers and was delivering them to Johannesburg Hospital School. “The people we gave the hampers to were very nice and friendly, and appreciated everything we gave them,” he said. “I thought the school building needed a little work, so I asked my dad if his company could sponsor the school.”

Mark’s father, Guy, is managing director at Trollope Mining Services. The company hosts an annual mountain bike challenge, the Lesotho High Altitude Challenge, and donates the sponsorships that the cyclists raise – along with generous donations from the company’s suppliers, sub-contractors and clients – to charity. This year, due to Mark’s prompting, the company’s charity scouts visited the school and decided that it should be one of two recipients for the annual charity drive.

As it happens, the school asked not for assistance improving their building, but for something they have desperately needed for some time – a bus that will allow teachers to take the learners on outings where they can learn the skills that other, more able-bodied people take for granted. These skills include how to greet shop assistants and ask for help; how to choose items and pay for them in a supermarket, and how to negotiate the enormous potential confusions, for a severely autistic child, of using an public bathroom.

These simple activities can cause such anxiety in autistic children that they have a complete meltdown. Learning to negotiate public spaces is crucial for the future of autistic children in society, and also to enable their families to function as ‘normally’ as possible in their own communities.

By tradition, Trollope Mining Service’s Lesotho High Altitude Cycle Challenge mainly raises money for disadvantaged disabled children. This year the cycle challenge was taken to the next level with a new, very tough ‘ xtreme’ route covering 300km, over longer distances and even rockier terrain than in previous years, and reaching an even higher altitude.

The result was that enough money was raised enough money to buy the school a brand-new 22-seater VW Crafter Bus, costing over R600 000. The bus was presented to the Autism School at a company function in May.

“We have been fundraising for the bus for some time, and are overjoyed to be receiving it,” said the school’s principal, Ronel van Biljon. “It is going to make an enormous difference, in hundreds of our learners’ lives.

“Thank you to Mark for having an open heart, and for doing what he could to help others. We are very touched that it was a child’s efforts that resulted in such an important gift for the young learners at our school.”

Mark was named Pupil of the Month at his school for “recognising that there were children in need who would benefit from a charity drive”, and opting for the Johannesburg Hospital School for Autism.

“I feel great that I helped a school with something that will benefit the children every day – and will also help give the children a better future,” says Mark.

This blog post was written by Jo-Anne Smetherham