Gavan Reilly: Why don’t we talk more about our kids’ challenges?

If you’ll allow me a personal indulgence, I was overwhelmed by the response to some comments I made on my Newstalk show last Sunday – April 2, World Autism Awareness Day – about the things that people should be aware of, when it comes to navigating a diagnosis of early childhood autism in your home.

If you didn’t hear the piece, it’s available to listen back in full on the Newstalk website, and I’ve tweeted the full video (it’s about eight minutes long). If you haven’t seen it and aren’t bothered to hunt it down, I can summarise it fairly briefly. Although by law a child who is thought to have developmental differences is entitled to an ‘assessment of need’ within six months, the average waiting time is 17 months and for some it takes four years.

After that, the child can’t necessarily expect the therapies they need because a quarter of those posts are vacant.

And while there are some excellent pieces of the public system, such as the early intervention pre-school programmes which are often delivered on the site of a primary school, there’s the simple fact that you can only enroll in one after an autism diagnosis… and if you wanted for the public system to provide you with one, you’d probably be at primary age.

In short, if your child is autistic, it’s not just their autism that you’ve to be aware of.

What I was struck by – as I was on the brief previous occasion that I’d ever mentioned having a child with autism – was the sheer volume of replies, texts, emails and DMs from people going through exactly the same path. There were people I’d have long professional relationships with; people from NGOs and interest groups, from press offices, from the media. Even TDs themselves, some from outside Leinster and absent for days at a time, juggling the same guilt of needing to make a living and asking others to carry the busy complications of home.

There’s two realisations you can take from this. The first is that there are so, so many more people walking the same roads that so, so many of us think we’re walking alone. So why we do all feel we are unaccompanied on the journey? Why are so many of us so reticent to address it aloud? Is there still some remnant stigma about having an autistic child? Is it the understandable inclination to want to protect the child’s privacy by not making a national talking point about it?

Is it simply the exhaustion of dealing with life that there isn’t energy left for anything more?

The more depressing second realisation is that if so many people in and around Leinster House all have the same frustrations – and all have the same burning determination to change the system, to eliminate waiting lists, to better equip our kids – and yet the system remains the same… is it simply beyond fixing?