My Child's Autistic - Now What?

Apr 13, 2022

Parents it’s not your fault.

As parent’s we’re always looking for ways to help, support and guide our children, when our kids have differences and their behaviour at home is different to the behaviours they display in external settings, it can be difficult to get the help and support some of us so desperately need. Raising kids is hard enough, but when you add in learning and social differences such as autism it adds an extra layer to the challenge. It is infuriating when you reach out for support, yet the help you seek doesn’t come. Instead, you are judged, you’re looked down on. You’re told that your child doesn’t act like this in school, therefore it must be you who is at fault, in effect your parenting style is damaging your child!

How toxic is that!?!

I know that I internalised a lot of my son’s challenges, felt like I was somehow to blame. This wasn’t helped by the systems telling me that I needed to go on a parenting course, a course that was going to point out that I was already doing a really great job at meeting my child’s needs, not that they were likely to recognise that. They are patronising and condescending. I remember when my son was a baby, he had acid reflux, this meant that he was awesome at projectile vomiting. When I raised it with the health visitor, she acted like I was being a neurotic young parent, I was 21 when I had R, a first-time parent and I was far from neurotic, something wasn’t right. As his weight started to drop going from the 95th percentile down to the 25th pretty quickly, all normal I was told, then the DR said the complete opposite and sent us to hospital as he thought he “might” have internal problems. When the paediatrician at the hospital asked me what I as his mother thought was wrong, I told her that I thought it was reflux, she smiled, agreed with me and handed me a prescription for junior Gaviscon. R gained weight, he had only two more goes at projectile vomiting and that was because I was jiggling about with him far too soon after feeding him… Lesson learnt!

How much easier would our lives be if medical professionals listened to us parents, when we say there’s something wrong, or something isn’t quite right, or that we need support, being sent on a parenting programme, or being dismissed as neurotic is the last thing we need.

Recently my son and I decided to take action, my parenting style has absolutely raised some eyebrows over the years, and I genuinely don’t care. I asked for help you can read our story here and it never came, instead all I received was suspicion and blame. The statement that really did it for me was the school nurse telling me that my son was just a hot-headed teenager (he wasn’t even 12 years old) and that all boys went through this, he’d tried to throw himself out of a window from a first floor flat. Maybe it’s me but I don’t see anything regular about that behaviour, we needed coping techniques and I went and found them myself.

As a result of my parenting style, pulling R from school, allowing him the freedom to have a childhood free from a curriculum he had no interest in and teaching him about real world topics, he’s turning into a well-rounded person. Of course, there are challenges, he’s a teenage boy with raging hormones, I’m a mum who juggles a lot and is constantly trying not to burn out and hit a wall, we both aim for balance and stability it doesn’t mean we always get it right, we are human. What we have managed to do is develop the tools to not kill each other (said in jest of course) I know when he needs space because he tells me, he knows when I need space because I tell him, and I’ve done that for years. When he was little, I would put myself in time out, time out for “grownups” (I laugh at the thought of being all grown up, we’re all just winging it at life, just some of us are more honest about it).

Our toolbox is built on years of what I now know to be my special interest, some people go their entire lives not knowing that personal development exists, but for me I am an ungrounded wreck if I don’t have access to learning. In 2019 when I realised, I’m autistic I started to look at the tools I’d been using to help myself and I tweaked them to work for my autistic brain, once I had developed them further, I started to teach them to other autistic people and the results have been astounding. Children telling their pastoral workers what their sensory needs are and advocating for themselves, one child I work with was asked to create a whole school assembly about autism, she did that and she delivered it with great success, she’s now working on communication cards so that she can help other autistic people, one of the children I worked with went and started his own club at the library, he organised it all himself. This shows that when you have the right tools, when you have an understanding and when you can start to understand the language of autism and neurodivergency your child’s life and the lives of those around you can change for the better and they can change fast.

If you’d like support with this, you can find the full details of our course here  This has been written and designed by myself and R, two autistic people, one teenager and one old autistic fossil (his words not mine, I’m not even 40 yet!) I wanted R’s input so that it was relevant, he added lots of things in that I’d never have considered, and it gave him purpose and forms a part of his education, because education comes in many forms and learning how to put yourself first and why that’s important isn’t something you’re taught in the school system.