Parents with autistic kids need the right support

Becoming a parent can be easy for some, more difficult for others. Being a parent can be the same. Some take to it like a fish to water and for others it can be a daily struggle.  What must be really difficult is when your child’s autistic behaviour is misunderstood and as a result you are considered a bad parent.

Indeed, I'm saddened by the news that a BBC investigation has found that a lack of understanding about the way autism affects families has seen people inappropriately sent on parenting courses. Essentially these parents are 'blamed' for children with autism's behaviour.

It could be worse. In 1948, The Times Magazine ran an article suggesting that autistic behaviour in children was actually caused by their mothers. Many people with autism have difficulty engaging with the world, or at least appear to. This article suggested that these 'frosted children' became autistic because their 'refrigerator mothers' failed to bond with them. Autism itself was caused by poor parenting.

Had I been a mother then, I may have been blamed for Anthony's autism and his behaviour. Despite looking down on the face of my child and loving him, being prepared to do anything to help him and desperately following the advice of health professionals, I would have been the 'cold mother', the 'bad parent'.

Nearly 70 years later, although there is still some uncertainty as to the cause of autism, most evidence now points to it being a genetic condition. The very first thing said to me upon our eldest’s diagnosis was "It's nothing you did or didn't do.  This is not your fault."

However, this better understanding of autism’s potential cause has not necessarily gone hand-in-hand with an understanding about its impact.

Our eldest son, Anthony, had four visits to A&E and walk-in centers in the year before he started school with various ‘fall’ related injuries. He has two scars on his beautiful face, one from tripping and his cheek bone hitting the coffee table and the other from falling over the side of an armchair.  Did I feel like a bad parent? Yes.  Did I need parenting classes? No.

What I needed was the support (that I soon received) to help me understand that Anthony’s mind interpreted things differently.  He couldn’t ‘feel’ where his body was and would literally trip over his own feet or over balance without realising it.  With this information and some exercises we can help prevent some falls, and we’ve now cushioned the edges of most of the furniture in our home.

When our middle child, David, was five, he had a fairly unkempt appearance. He had gorgeous, but unevenly cut hair, ragged fingernails and his eyes had giant black dark circles that looked like he’d not been getting enough sleep.  Did I feel like a bad parent?  Well no, I felt exhausted.  Did I need parenting classes?  No, but a week of sleep would have worked.  Part of being autistic for David is difficulty in being touched and difficulty in sleeping. I understand this because I was given the right help and found the right information.

David would be awake for several hours in the middle of the night every night.  We’ve tried soo many things to help him sleep and had advice from professionals and sleep clinics.  He now sleeps a bit better, but not great.

We used to have to pin David down to have his nails cut and by the time he was five this was quite difficult.  He was also liable to scratching when he got scared, so, this meant sometimes it was easier to nibble David’s nails than to cut them This made them look a bit ragged.  Let’s not even talk about how frightening he found clippers and the noise or atmosphere of the hairdressers.  Which explains why I was cutting his hair at home and it looked messy.

In fact, I still cut his hair. Nowadays though, I’ve had some practice so it doesn’t look as ridiculous, though still adorably cute in my eyes.  Anthony was unable to go to the hairdressers when he was younger either.  But slowly, with support, we’ve developed an understanding of him, what he fears and now he can go and get his haircut with his father.

But what neither our little boy in A&E nor our shaggy haired child needed was for the affects of the autistic behaviour to be misunderstood and their parent to be given the wrong support. Despite the obvious waste of time, the real concern is that these parents are not actually getting the support they need.  And that goes for every parent whatever their needs or challenges.

What my kids needed, and other autistic kids need now, is an understanding of them and the right support for their parents. Because with this right support, Anthony barely ends up in A&E, his brother can have his nails cut and maybe, one day, both boys will be able to go to the hairdresser together.