My story is a story about a boy who loved words so much but couldn’t say them. It’s the story of someone who could control his thoughts but couldn’t control his body. Priceless was the time when I was small. Two little sweet chubby babes adored by their mother and big sister. Yes, this is an important part of my story. I am part of a twin. Phila is the other part of my soul. We are so different but the same in our spirits.

Anyway. Back to those sweet babes. I always knew I was different but at that stage no one else did. So I had the same milk and same stimulation. Boy was I going to be a big surprise soon. I was so deeply loved by my mother. I still am. She is the warmest human you will ever meet.

So in the end I was born different. This is important because so many try to find reasons for me being who I am. I am who I am. I am who my creator made me to be. Even on the darkest of days I never forget this. And so I grew. The more I grew the more apparent it became that I was different. I was bigger and stronger than the other kids but I moved strangely and – worst of all – I wasn’t talking.

This is what people saw from the outside. My personal experience was quite different. When I was little the world was such an overwhelming place. Every sensory experience was too much. I had meltdowns all the time. My sensory system is still intense but my brain processes it better.
Another thing that was happening is that I was observing. I observed print and learned to read. I observed people and came to understand them. Today I read people so well. Most are an open book to me.

I am so grateful to be able to tell my story. Most people have no idea what it’s like to grow up as a nonspeaker. It is both hard and beautiful. The hard part is all the judgement. It comes from doctors, therapists, teachers and the general public. It’s so hard to constantly hear you are low functioning. It’s hard when people react to you in fear. It’s hard that you can’t say the thoughts in your head.

The beauty lies in the beautiful people that enter your life and the way you engage with the world. As an autistic person, I see we are very divisive. Either people like us or they don’t. There is no middle ground. But the ones drawn to us are the best ones of all. The lovers. The empaths. The gentle souls. We are so blessed with the kind souls that journey with us. They manage to eclipse the darkness.

Let me also speak about the sensory world of the nonspeaker. I talk for myself here but my world is insanely beautiful. Colours are more vivid and my sense work together in beautiful ways. I am a synesthete so my sensory world is so different. I’m grateful for my interesting world. I am very blessed in my life to have so many people who love and understand me. My mother is my number one supporter. She never stops fighting for me. She has moved mountains for me. I am so grateful to her for giving me a normal and fun life. I even love it if she shouts at me, it makes me feel like a regular kid.

The other significant adult in my life is my speech therapist, Tracy. She has saved me from a meaningless life. I’m so grateful to her. To have found someone so full of love and empathy with no greed or pride is such a blessing to our family. I am blessed that through my mom and Tracy, others have seen me for who I am. I have seen the way they look at me with love and treat me with respect then others do too. Through this, I now have more loving and respectful people in my life. My beloved teacher Nicola came next. Because of her, I have a meaningful education. I am at a school with kids like me so I have friends. I am so grateful to have friends. One of the biggest misconceptions of autism is that we are loners. My friends mean everything to me. I have some very special connections with some very special friends. I have found my tribe.

The next important person to enter my life was Dr Isaura Ribeiro. I still remember our first meeting. Tracy came with as my communication partner and so I answered all her questions myself. I remember the tears in her eyes as she saw me for who I really was. Something special was born in that room that day. Isaura became a staunch advocate for nonspeakers and unreliable speakers. She fights so hard for us now. She is quite outspoken and people listen to her. So many have found their voice because she looked below the surface and saw the person crying for help inside.

Too special is the little tribe we have formed. Too special is the work we do. I love who I am when I’m doing advocacy with this group. So special to share an advocacy group platform with my fierce lionesses and my brothers and sisters in advocacy. We make a formidable team. I have loved this opportunity to tell my story. There is so much more I want to say but this is a story, not a book. Suffice to say I am happy and my life is full. It’s not always easy being a nonspeaking autistic with a kinetic body but I’m so grateful for the life I have.

Until next time,

Akha

Dear Reader

Today, I want to reflect on the year that has passed. It has been a tough one indeed. I think everyone thought it would be the year of getting back to normal after the pandemic. However, what ensued was a year of insanity. I have never seen a year where so many humans have pushed so hard or have been pushed. Everyone I know is at breaking point. I see desperation in so many faces. I feel sadness welling from so many hearts. I can relate. We as a family had our own challenges. May I say, it’s been the most challenging year. My mom is stretched so thin. I’m grateful for all she does for me. Especially for the education centre I’m in. I see how she supports it so I can fulfil my destiny. I’m eternally grateful to her. I hope 2023 will be a better year for humanity.

Until next time

Akha

In the end, we have to be comfortable with the choices we make. I recently had the situation where my actions were misunderstood. I certainly have a silly body that does silly things, but this was extreme. I was doing embarrassing things around my twin sister. I’m sure it was terrible for her, but it was no fun for me either. Now I have to tell you that my twin and I had always had a super close relationship. After you’ve shared a womb its hard not to be well bounded. I was feeling distance between us, and I hated it. I wanted to fix it but it’s hard to do it when you can’t talk. I found this anxiety about our relationship seeping out as embarrassing behaviour around her.

Can you imagine how it felt to be doing these things knowing she was hating me more every time I did them. It was excruciating, I can tell you. But luckily, Mummy, Tracy and I had a chat and figured out what was going on. I had insight into my terrible behaviour, and it brought such relief. I now know what was going on and I could fix it. So, we set up a meeting with my twin and me. We both had an opportunity to say our side. Others may have thought we fixed it too quickly. I disagree. We just reminded each other who we are. We have shared a whole life, so we just needed a reminder to fix it. I am so grateful. I need her so much. She is the other part of my soul.

I think we need to choose to fight for the important relationships in our lives. They are what makes life worth living.

Until next time,

Akha

By Akha Khumalo

• 

The earth lets out a sigh

She is bleeding

Wounded to the core

Her people are hurting

They know not what they do

They are frightened and angry

Broken people in a broken land

Hear us oh Lord

We call upon you now

We need your grace

We need your love and forgiveness

Heal our land today

Make Mother Earth glad again

Lest we forget who we are

We are Africans

Proud and fierce

We are warriors

We protect our land

We love her and she nurtures us

This is who we are

Heal our land

Hi Friends

Today I will discuss something close to my heart. I want to stand in the place of other nonspeakers and advocate for them.

Have you ever seen a nonspeaker who hasn’t found their voice? I have. They are so lost and helpless. I feel their pain so much.

You see, I was once there too. I had a head full of brains and thoughts and ideas. I had emotions and feelings about everything I saw and heard. I wanted to say something in every situation, but I couldn’t. I had no way to communicate. You cannot imagine how that feels. At first you are hopeful but then despair sets in. You start to realise that no one has seen you. You see that the people around you have lost hope too. They are starting to believe what the professionals are telling them. They see your intelligence but get brainwashed into believing the professionals. They hear so often that you are low functioning that they doubt themselves.

So they believe them.

The worst part is hearing yourself described in this way. It breaks your heart in so many ways. All you want is to be seen for who you are. For someone to say “hey, I see you there in your dyspraxic body”.

My story is a happy one. I found that person. Tracy saw me immediately and started to help me out of my prison. I am forever grateful that Mommy brought me to her.

But many are not so lucky. They are stuck in schools that treat them as low functioning. They have doctors say that they are too stupid to learn. They are stuck in prisons of hell. My heart breaks for them. My soul screams with theirs.

“See me”.

“Save me”.

“Help me”.

We need to find them and liberate them from their dyspraxic bodies.

I will not rest until it’s done.

Yours in Activism

Akha

Hi Readers

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.

Until next time

Akha

A short story by Akha Khumalo

• 

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.

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

• 

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

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