Reflections by Pershy Gadas

 

16 years ago my son Ethan was diagnosed with autism. Then 4 years later he was given an additional diagnosis of ADHD. That was a very dark chapter in our lives. I loved my beautiful boy. I just didn’t know what to do besides pray for him. I prayed for enlightenment on how to be the best mum for my son. The more l went to church, the more l felt judged. I don’t blame the people who judged us, back then Ethan wasn’t this calm young man that everyone knows. He would get very overwhelmed and scream in frustration with hands over his ears, he would have proper meltdowns. I didn’t know what to do to help him. I don’t blame the people at church who judged us, most didn’t know about autism. Doesn’t the bible say my people perish cause of lack of knowledge. I loved church but we had to stop going it wasn’t fair on Ethan.

 

I started to borrow library books and read on autism. Yes I was doing a degree in special education studies so naturally it was a given l did this. The more l read, the more l understood my child. Sadly most of the literature and case studies were from American. There were British ones but it wasn’t a lot. Back then there was no social media so it was hard to find other people in a similar situation. My dissertation at uni was on lack of autistic representation in the media.

 

Fast forward to 2023, isn’t it ironic Ethan is now in the media. Ethan recently participated in Inside our autistic minds presented by Chris Packham. Initially both Ethan and l were not sure if this was something we should be a part of. Anna Kennedy the charity patron of AKO, where Ethan is an ambassador. Ethan has danced at AKO events for years, talked on the radio a couple of times and wrote 2 original grime tracks for them. Anna encouraged us to meet with a casting executive who also understands autism. Her brother is autistic and was on an autism documentary years ago. After meeting her it was an easy decision to make. We’ve always supported others in the same situation as us, be it in a support group, over coffee or inviting a friend of a friend to come to our home and meet Ethan after a diagnosis. We do all this to give the support we never had. We’re helping to build our autism village.

 

On the first day of filming Chris met Ethan at the college for the first time then we all met him at home. He is down to earth and kind. Chris was diagnosed with autism as an adult. It was quite refreshing to talk to an adult autistic about Ethan. As well as my fears and anxiety on his future. Since leaving school, friends have become less important to Ethan. He sits in his room and writes his music, create beats, do uni work and most times says he doesn’t want to go out of the house with no purpose. Chris says he is the same. He told Ethan’s dad and l, he has not kept in touch with the people from uni or old work places. I now understand the importance of how and why Ethan wants to do his music, that’s a goal to him. If he goes out he gets overwhelmed, getting sensory overload, therefore it’s not worth it. It explains why Ethan shuts down after being out of the house for a while or from dancing back in the day.

 

In the documentary Ethan made a film on being overwhelmed. The film is titled sensory overload. Spoiler alert for those yet to watch IOAM. Ethan invited his college mates, Chaz a very talented visual artist who’s worked with Kanye etc and did the graphics for the film (now he’s worked with Ethan wow) me, his dad Duma and little sister Gigi. During the film screening everything was heightened, it was overwhelming. Everyone at the end had a different perspective on autism. Ethan’s video is amazingly descriptive on how he feels. Already the reviews on this have been very positive. Some would love for Ethan’s video and of the others to be used as teaching resources in schools etc. Duma and l, hope the families in our African community can watch these as well, especially Ethan’s one. I would love if one of the places would be the church. It’s not just schools that need to be taught autism acceptance. At least now if someone sees a child wearing ear defenders, they will understand why the child needs them. I just wish someone would’ve done all this before Ethan was diagnosed and maybe l wouldn’t have ended up suffering from depression. I felt very lonely and judged most days back then. l also believe in the universe and God knowing what we need. I love how Ethan says all this hasn’t phased him he just wants kids and adults to understand a visual representation of what’s going on inside his autistic mind.

 

https://www.bbc.co.uk/programmes/b09b1zbb

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