My eldest child Josh is 17 now. But at the time of writing the original blog below, Josh was 16. Josh often asks what I'm huffing about this time, while I read through another article or post about Autism.
You see, almost all of the easily accessible articles, blogs, musings and thoughts about autism seem to be written by an expert in the field with a medical or psychological perspective when the experts on autism are those who are autistic. Josh's reply while hearing me huff through one of the many inaccurate articles I had been reading was "Why don't they just ask us?"
You see, Josh is autistic and although I am an expert on being a mum to Autistic children, Josh is an expert on what it means to be autistic, so here is our conversation that Josh was happy for me to share and help educate others.
How did you feel when you were diagnosed with Autism?
I don't really remember, as I was young but I can tell you how I would feel if i was diagnosed now. Id be happy that I don't need to go through any more assessments, I remember having a long history with Camhs and being glad to be discharged. Experts can put a word to how I am, which means other people can understand me better, and it means I can get the help I need but it doesn't change who I am. It just helps others know who I am. (Josh was flagged at 8 months old when some mile stones weren't met and by age 3, it was clear there was significant autistic traits and associated difficulties. There were many assessments over the years, coupled with an incorrect diagnosis' at 6, so by the time a definitive diagnosis was reached at 9, Joshs words to the Dr were 'Thanks does this mean you will leave me alone now?')
Do you think raising awareness of autism helps?
It depends, awareness can help because people are then more aware and have more knowledge about different ways autistic people might act, but just knowing something doesn't make a difference. You have to actually apply that knowledge to what it needs to be applied to.
You have to actually use that knowledge and adjust your own behaviour, actions or expectations, once you have better knowledge of that thing.
What do you think schools could do to help autistic students?
From my experience, what did they do full stop? That's why I was home educated and why I'm now at college instead. All staff in schools should have a base line understanding about autism, with specialised training for staff who deal more closely with actually teaching students, such as teachers and teaching assistants. This would help students to be engaged more actively and get them able to access the same education as neuro typical students. but honestly? ANYTHING would help as things really aren't great.
Do Autistic people understand each other better? I know you seem to have a knack for becoming friends with people who happen to also be autistic.
There isn't some secret autism society or a secret handshake! The reason that autistic people gravitate towards other people who are autistic, is because they are naturally used to diversity in themselves, so see it in other people. I'm more accepting of diversity of all kinds, because of the diversity I have within myself.
What would you like to see people become more aware of, when it comes to autism?
I don't know what would help, because every person is different and every person has different strengths and weaknesses, and for us, its even more diverse and different. Some people will really struggle in certain situations, while others thrive, and there's not really one thing that would help everyone. But asking specific questions really helps. People need to be aware that its okay to ask an autistic person questions, if it means you can understand the person better.
Do you think people should be trying to 'cure' autism?
No. What we classify as autism is just different brain chemistry, neurological differences. I don't have symptoms of autism. I have parts of my character that are autistic, autism is a part of me, like a leg or arm.
There has been a huge rise in autism, or the diagnosis of autism, over the years what do you think has caused that?
People were previously writing autistic people off as wusses, weirdos, they were placed into homes, mental homes and asylums, forced to mask parts of who they were but autistic people are now a large part of society and its harder for people to ignore that we exist anymore or to write us off. We have better diagnostics, autism is more recognised as a neuro developmental disorder. Yes its possible that there are external factors that come into play, but that's the same as anything in the world. I was born Autistic, there isn't something that suddenly made me autistic.
Is there anything you wish you could change?
I wish people didn't see autism as a disease or something that's a bad thing. Autism is neutral, its just how my brain works and I am not a collection of symptoms or traits. I'm Josh. I get up late, stay up late, play computer games, see my friends, do parkour, get into trouble climbing up buildings (LOL), love to read, try hard at college, help at home, use sarcasm as a second language and wind my brothers and sister up.
If you want an expert, ask the person with the diverse brain.Trust me, we are way more accepting and understanding than many, because we live it.
Thanks for reading,
Nici and Josh