Making friends

By Akha Khumalo

Dear readers,

Today I want to talk about making friends. I think many parents feel they need to put their autistic children in a school so they can socialise. Although this seems like a good idea it’s not how it works. Being around other kids doesn’t make you friends. Being near each other doesn’t build relationships. Because communication builds relationships, not proximity. My wonderful speech therapist Tracy noticed how lonely I was. I was surrounded by kids but I didn’t have one friend. In fact many of the kids were mean to me. Because I didn’t speak they thought I was stupid. They mocked me and called me names. Even when Tracy came in and I spoke to them on the boards, things didn’t change. I was then homeschooled for a while. Then I met Thabi. My whole life changed. I finally had a friend. Tracy facilitated conversations between us. I learned we liked the same TV programs. I have discovered we like similar food but I eat his tomatoes and he eats my crackers. We sit together and watch movies. He stood up for me when someone was unfair to me. I love him so much. There’s nothing quite like having a friend. I wish every autistic person could have one wonderful friend like mine.

Until next time,

Akha

Being Affectionate

Dear Readers

Today I am going to talk about how I give affection. When you live in an uncontrollable body, it’s hard to show affection to those you love. It’s hard when you love people so fiercely, but you can’t show it. You take it for granted that you can just tell someone that you love them or give them a hug. I can’t do either. My silly body doesn’t allow me to do either of these things.

I have to be creative to show my love. I have thought of different ways to do this. I like to look into other people eyes intently so they can see I’m in here. I like to touch those I love gently on the face. I squeeze my chin into their arms and legs. I place my head against their bodies and leave it there.

I know they are not the conventional ways of showing affection, but they are all I have. Please accept them from me.

Since I have my voice on the letterboards it’s much easier. I can now tell people that I love them and how much they mean to me. Communication is key to relationships.

Until next time

Akha

Presumption of Competence

By Akha Khumalo

Dear Readers

Today I want to talk about my education. My wonderful mother has always fought for an equal education for me. Even when I was small, I went to mainstream preschools.

We did ABA (applied behaviour analysis) for a short time before we worked out how terrible it is. Autism can’t be cured, and you can’t train us like dogs. What the ABA people are missing is that autism is neurological and that we are whole people with no pieces missing. They presume incompetence.

My education presumes competence. My teacher knows how smart I am and provides an age appropriate education to me. It started with me being home schooled by the world’s best teacher, Nicola. We used to work at my house, but I was very lonely. Before it became unbearable my wonderful Mother and Tracy came up with a plan. There was another boy who needed a new school and I needed a friend. So we started a home schooling consortium. We are doing age appropriate education and other activities. We are respected and loved for who we are. We are understood and stimulated mentally.

My wish is that all non-speaking autistics have an education like mine. I wish I could free them from their terrible schools where they are treated like babies. They are heavy on my heart.

Until next time,

Akha

Love

Dear Readers

Today I’m going to talk about falling in love. Now before you get all excited let me clarify. I am not talking about romantic love. The type of love I am talking about is the love you feel when someone really gets you.

I remember how I used to feel when everyone thought I was low functioning. I was so sad and lost. I thought that no one would ever see me and that I would be trapped forever. But my wonderful mother never gave up on me.

I was taken to see Tracy Gunn who is a Speech Therapist. She is trained to work with non-speaking autistics. She sees me. She understands my body and respects my brain. She fights to make sure I get a good education and she finds friends for me. I love her so much.

My wish is that every non-speaking autistic can find a Tracy. Someone who fights for them and gives them a voice.

Until next time

Akha

Let’s talk about regulation

Dear Readers

I want to talk about regulation. Autistic people have really sensitive bodies. Please be aware that things that you might not be aware of may disturb the autistic person. Anything from a buzzing light to a scratchy label can cause them to be dysregulated.

I am often dysregulated by noises like a truck going past or a baby crying. I am also dysregulated by things going on inside my body. If I am tired or sick or low, I am also dysregulated. I am also dysregulated by other people’s emotions. If people around me are tired or sick or sad I can feel it. You have to remember that many autists are empaths and can sense people’s feelings. I am very tuned into the people I love. Their feelings can really drain me.

I am dysregulated by changes in weather. I can sense changes in atmospheric pressure and in temperature. I suffer from seasonal affective disorder during winter. It makes me feel depressed.

When I am dysregulated, my body is extra silly. It is such hard work to keep it under control. The best way to control my regulation is to talk about how I feel on the letter boards. Then I feel understood. I then relax because I am no longer alone with my emotions. Communication is the key to regulation. I am so grateful for my voice.

Until next time

Akha

Respecting Autistics

Dear Readers

Today I want to talk about respecting autistic people. People think that because some autistics can’t speak, they are low functioning but this is not true. The only reason they are not speaking is because they have motor planning difficulties. This is interfering with their ability to speak. Let me assure you that they would talk if they could.

The way you treat them is so important. Imagine that you were smart but trapped in your body. Imagine if people spoke to you as if you were a baby. How would that make you feel? That is how the autistic person feels all the time.

Let them know that you see them in there. The thought that they are not seen is frightening. So scary that you might be missed. So scary that you might be trapped in your body forever and no one will ever see you.

Then, when you speak to them, let them know that you know that they are smart. Be respectful of their brains and talk to them like you would talk to anyone of their age. Talk to them about interesting things. Never talk to them like a baby.

Until next time

Akha