It is a never-ending battle to get my autistic child the help he needs

Autism is a spectrum. There is no simple ‘therapy’ inasmuch as the wildly diverse group of people on it need therapy. To be honest, it’s those of us not on the spectrum who have the problems that are in need of treatment

There is too much paperwork and the people responsible appear to want to deploy the least amount of resources as possible (Getty/iStock)

I wonder if anyone’s ever come up with a course designed to teach people how to swim through thick soup?

If they had, it would be highly appropriate for anyone with a child on the autism spectrum.

The National Autistic Society was moved to launch a campaign on the back of research showing that the average wait for those of us in that position is three and a half years.

That’s an average. So while some people will get there more quickly, others will be stuck trying to work their way through a support system that sometimes seems set up to do the exact opposite for very much longer.

You may have noticed that it is World Autism Awareness Week which is what has prompted me to write this column. My son displays many of the characteristics commonly associated by what is sometimes known as Asperger Syndrome: he is a high academic achiever but struggles greatly with social interactions and displays numerous other behavioural tics characteristic of the condition.

As such, we’re in the early stages of our minestrone marathon swim.

We’re filling in endless forms, with endless boxes, which don’t always get to where they need to go. We’re booking appointments, we’re making phone calls, we’re in and out of school for meetings in an attempt to get a rather wonderful boy the support he desperately needs.

And we’re waiting. And waiting and waiting and waiting in the knowledge that even when the list has inched forward enough to leave us at the top, that’s when the fun really begins.

“Everyone is an individual” is a phrase you’ll often hear, but our health and education systems struggle with the concept at the best of times, despite what the mission statements you find on websites would have you believe.

Autism is a spectrum. There is no simple “therapy” inasmuch as the wildly diverse group of people on it need therapy. To be honest, it’s those of us not on the spectrum who have the problems that are in need of treatment.

“The system” struggles to cope with conditions that aren’t easily categorised, however I would argue it isn’t above using the defence of administrative chaos when it comes to denying assistance to people that need it.

How much of that long wait is down to professionals simply not wanting to give a diagnosis that will require other professionals to deploy resources? I do wonder.

We may be in for a fight, according to people who have advised us, people who know our son and recognise his behaviours for what (we think) they are.

Have you thought of videoing him? A good idea, perhaps, but grappling with the iPad when he is in distress doesn’t tend to fall high on the list of my priorities.

I know what’s happening when I hear my wife calmly intoning “breathe, breathe” and I know that the first thing I want to do is reassure myself that our son is OK.

The NHS will, from April, start recording waiting times for diagnoses. It’s one thing to record them and another to do something about it if they are found to be too long. If the research is correct they are far, far too long.

Beyond that, there needs to be a change in attitudes, such that when diagnoses are secured the assistance offered is tailored to the individual’s needs and not to the convenience of a box on a form created by a resource allocation commissar whose chief aim is to ensure that the minimum possible gets spent.

It starts with treating people as individuals and listening to what they’re saying. It really is that simple. It’s just that those with positions in the system seem to find that harder than quantum mechanics. As I said, it’s not people on the spectrum who have the problem here.