Wednesday, 11 October 2017

On being an Autistic Mum to an Autistic Child

With the kind permission of our fabulous son, Chris (featured in the photo, a couple of years back), a little about life as a parent of an autistic young person.

Actually, as an autistic parent, of an autistic PDA young person.  Although he's a young adult, now, working as a fellow autism specialist.

On this journey, there have been some fantastic people.  I thank them all.  What I am about to describe is a selection of the situations so many of us have experienced, though.

Things we've worked through together as a family...a tiny sample...

Non-autistic parents sneering at Chris's social behaviour, and judging us as parents.
Having to teach Chris traffic skills, when he used to dash out in front of passing traffic if we didn't keep 100% focus.
Pulling him out of a pond, where he'd nearly drowned, unaware that it was water.
The hell for us both, in sensory environments that brought the pair of us to our knees.

18 hr days where it was absolutely non-stop with him.
Battling schools who described him as 'just not very intelligent' and writing off his chances.
Having to fight the education system time after time, changing schools twice as a result.
Him being berated by some teachers for not being able to match up to their expectations, when in sensory hell.
Watching some non-autistic friends abandoning him because he couldn't do their social events.
Watching some non-autistic people targeting him for insults and abuse. [Not that wise, when someone's a rugby prop, but that's another story...]

Me as an autistic parent, struggling to cope, without outside support, in the early years.
Me as an autistic parent, struggling to cope, without outside support, through chemotherapy and other treatments for aggressive breast cancer.  Me as an autistic parent who has a number of other disabilities and differences, including arthritis, faceblindness and spinal scoliosis.
Me as an autistic parent being told by some autism hate groups that I have no clue about autism and should just shut up.  But not as politely as that.
Me, and the whole family, living through two recessions that very nearly sank us, financially.

Chris working through the sensory hell of keratoconus and related eye surgery, and all of the difficulties with light processing that he has had since.
The assumption that because I can talk 2/3 of the time, that I can advocate always, confidently, and 100% accurately.  On demand.  In any sensory and social environment, any time of day.
The assumption that because I am hoping for a world that loves and accepts autistic people, I cannot possibly know about Real Autism, and Real Autism Parenting. 
These and so many other things.

I'll tell you something - that Chris is such a blessing to us.  He is absolutely fantastic and has brought so much to our lives.   He is hugely loved.  There is nothing about him that I would change.

I've watched him overcome huge odds, time after time.
I've listened as a minority of parents sit down in front of me to talk about how their own offspring have entered the finest possible Universities, gained the finest possible Degrees...and then quite literally sneered at Chris's achievements.  It's odd; we couldn't be more proud of our son and all he has overcome.

Goodness me, we've lived through stuff.  Together. As a family.  Every misconception, every setback, every item of hate.

I would like a world where autistic people don't have to fight for every single thing.
I'd like a world where parents of autistic people are not left exhausted and unsupported through the most dire situations.
I'd like a world where autistic people are valued, loved and enabled to thrive.
For those things, I work hard, like so many other autistic people.  Am I anything special in all of this?  No, just one of many.

i'd like every young autistic person to be valued by society.  Whether verbal or not. Whether of high, low or medium IQ.  Whether of any background, ethnicity, faith or nationality.  Of any gender and sexuality.  Of any set of other disabilities and conditions.  Each and every single one.

If you would like that too, join me and so many other autistic people, sharing the past and present, so that we can turn it into a better future.  Not for pity.  Not for attention.  Not for manipulation.  But because that future is not going to improve unless we acknowledge what needs to change.

Be the change.

Thank you.