I’m sorry it’s been so long since my last blog. I’ve been learning to use the keyboard. It takes a long time to learn a new skill when you have a really silly body. Throw in a pandemic and a family crisis and you’ll understand the delay.
I think this has been a tough time for many people, especially non speaking autistics. We are extra sensitive to changes in the world.
(large tears were rolling down Akha’s face and landing on his t-shirt.
T: What’s going on?
A: I’m emotional because it’s wonderful to talk and be heard and appreciated. You are so good to me Tracy.
T: I’m the lucky one. Do you want to leave that in your blog or keep it private?
A: Leave it in.)
I feel the anxiety of those around me. I feel it like it’s my own emotion. I need the people I love to be open to letting me into their emotions instead of trying to hide them. Everyone tries to be strong for me but that is not what I need. I need to feel real emotions not fake ones. They hurt me. I need you to trust me with your emotions.
Trust your autistic loved one with your emotions. Tell them how you feel and why. Let them carry your feelings in their hearts. They will love you more for it and they will never betray your confidence. Don’t worry – they can’t even if they wanted to! Make the most of your special relationship with your non speaker.
Early on Christmas morning there was a noise outside. Peter was sleeping when the noise awakened him. He went outside to see what had caused it. There he found a yellow mask made of wood. He put the mask on and suddenly everything changed.
You see, Peter was a non-speaking autistic and he had a silly body. When he put the mask on, he was immediately in control of his body. Suddenly he could talk and do anything with his body that he wanted to. He was so excited. It was a Christmas miracle.
He ran inside to tell his mother what had happened. But when he got inside, he found his family gone. He called and he called but they weren’t there. He went out into the street to look for them. He walked through the streets of his town to find them. They were nowhere to be found. In fact, the whole town was deserted, not a person in sight. He was frightened. He did not know what to do.
Suddenly he saw another person. It was a young girl and she looked as scared as him. She was also a non-speaking autistic. She was now also in charge of her body. She was also now alone. Peter and the girl now had each other. They walked around hand in hand looking for their families. They found other children who were also non-speaking autistics. Every one of them was alone. They were confused. They were scared.
“I think we’re alone now” said Peter. “We are in control now, but we are without the people that we love most. That is not the life that I want.”
“Me neither” said the girl. Everyone agreed.
“I will take the mask off now” said Peter. “I will be proudly autistic. I was made like this for a reason. I must fulfil my destiny.”
He pulled the mask off and everything returned to normal. Peter went on to live his life to the full. Never again did he wish to be neurotypical.
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.
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.
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.
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.
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.
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.
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.
I am so excited to write about
one of my favourite topics namely body mind disconnect. I have a super smart
brain and a super silly body. My brain knows exactly what it wants to do and
say but my body just won’t do it. Some people interpret my behaviour as how my
brain thinks. This is so hurtful as people then assume I’m stupid as my body does
such stupid things. I wish people wouldn’t jump to conclusions without getting
to know me first. I am so much more than what meets the eye.
Body mind disconnect is so
frustrating to live with. Imagine not being able to do simple things like
heading for bed when you are tired. Instead, your body heads in the opposite
direction, screaming. Just imagine how frustrating that must be. I wish I could
control my body and make it do what I want it to do.
Before making assumptions about
what I want rather ask me what I want on the letter boards. It is my only