Autism the, “Fashionable”, Disability?
Nadine Neckles
I'm Nadine, Mummy to my gorgeous princess G, she is my biggest inspiration and blessing. She also happens to have Chromosome 18q- a rare condition...
The choiceless indoctrination of "special needs" and acceptance of the new journey has been and still is an only going process.
Throughout you meet a number of families facing similar battles to you.
Battles for services, mountains of paper work, tireless days and nights filled with fear filled appointments and therapies, lack of sleep - the list goes on...You don't necessarily meet people who have the same condition as your child- however they may share some of the same struggles.
I have met a great many families who have a child with Autism.
In fact in my daughter's school I would estimate 95% of the population have Autism.
So you can probably understand why I sometimes feel out numbered.For a marginalised part of society I can sometimes feel even more different for not having a child with Autism.
Autism is very topical this year with documentaries such as ‘Richard and Jaco: Life with Autism’ highlighting it, drama series like ‘The A word’ created around it and characters appearing in soaps like Holby City with it.
Online in the world of blogging there are huge numbers of blogs highlighting the varying highs and lows of living with or raising a child with it.
I started to feel a bit jealous.
Isn't that ridiculous?I wished that the spotlight was on Chromosome 18q-, my daughter’s condition. I selfishly wished people had heard of it.
That shows were being created around it so family/friends/strangers would become a bit more aware and more accepting.
I started to wish we had an awareness month, where people would change their filters on Facebook in support.
I wished the BBC would contact me and ask me what it was like raising a child with a rare condition- let me speak about the lack of information and awareness you get from doctors about it.
I wished there was chromosome 18q- intervention service and local support groups.
I wish I could meet others who were grown up and living successfully with their condition.I wish I had friends walking a path very similar to mine who could share their own journeys and bridge the gap between feeling like I'm on an abnormal journey.
Autism almost seemed like the more known, accepted or, ‘fashionable’, thing.
However although my green eyed monster had reared its head I pondered the battles the children with Autism have to face as well as their families.The discrimination, the judgmental stares, lack of understanding, aloof family and friends and it became much clearer to me.
We might not have the same label but we had very similar experiences.
A win for them was a win for us.
People understanding why my daughter might suddenly cry or become agitated may now be looked at with a little more empathy knowing that some children have melt downs.
People understanding that a disability can be hidden and is not just people in a wheelchair may stop the stares I get when I drive into a disabled space.
Not all disabilities are immediately obvious.
If the blogs, the documentaries, the shows all continues to educate and inform others it will make life better for many who have Autism and other disabilities.If people start to understand that there is nothing "wrong" with them and that they are in fact blessings who learn things differently and actually teach us to be different better parents.
Then I am okay with Autism being the ‘fashionable’ Disability and taking the much needed lead in raising the necessary awareness around difference and disabilities.
