My son's wait for an autism diagnosis was relatively smooth compared to other families – and that's saying something

Diagnoses matter and not just because of the relief one can provide – it helped my son understand why he has always felt different and it has helped us better understand how to assist him with his issues

Did you know the government has an autism strategy, and in fact has had one for the last ten years? Even better, it’s being extended this year to cover children and young people for the first time. That’s a welcome, but sadly all too rare, sign of progressive policymaking in today’s Britain.

But wait just one minute, I hear you say, there’s not a lot of point extending a policy if it’s about as worthwhile as a broken down Austin Allegro (you’ll find details of how bad those things were in one of those books about crap cars that usually emerge at Christmas time).

So is it? Um…

The inspiration for writing this is a government report, released to little fanfare at the back end of this week. As you might guess, there is a good reason for that because the picture it paints is a less than happy one.

The report contains the results of an exercise that saw local authorities, as the lead agencies for implementing the strategy, health commissioners, supporting statutory bodies, and local autistic residents and carers being asked to review progress.

In just one of the eight sections of the authorities’ self-assessments – housing and accommodation – was the document able to highlight improvement, compared to 2016, the last time the exercise was conducted.

In five sections, the situation had fully deteriorated, with the employment and planning sections coming off worst.

The National Autistic Society is particularly concerned about what’s been happening in terms of diagnosis, where, per the report, the median average waiting time from referral to diagnostic assessment almost doubled from 16 to 30 weeks. And remember, that is only one part of the process.

While all local authorities said they had “diagnostic pathways” in place, “many downgraded their rating from green to amber”. The main reason? Their waiting times rose to exceed the three-month time limit specified in guidelines set out by the National Institute for Clinical Excellence.

This came as little surprise to me as the parent of a high functioning autistic child, who should in theory benefit from the extension of the strategy.

We endured long waits combined with an extensive to-ing and fro-ing to get reports finalised and released. We’ve spoken to others who have endured similar experiences. I was horrified to discover, in the research I’ve conducted, that our experience could actually be considered relatively smooth compared to others. A tortuous and stressful process appears to be the norm rather than the exception.

Diagnoses matter and not just because of the relief one can provide – my son’s diagnosis helped him understand why he has always felt different and it has helped us better understand how to assist him with his issues.

Although disability in general is a complex and layered subject, the state typically treats it as an ‘either or’. Either you pass a test that qualifies you for help, or you don’t, which leaves you out in the cold and in a very difficult situation. Autism is no different.

Combined with the fact that those on a “diagnostic pathway”, and/or their carers, are being pitched into a slow-moving bureaucratic hell, and it’s little wonder that some of them snap.

“Long waits can be traumatic for autistic people and their families, who are often desperate for help. Having a diagnosis is often vital to getting support. Without it many develop mental health problems like anxiety or depression – and end up being pushed to crisis point,” said Jane Harris, director of external affairs at the National Autistic Society.

So much for the government’s commitment to improving mental health.

My family weren’t pushed to that sort of extreme, but the process did cause us a lot of unnecessary worry and stress.

Needless to say, the report also highlights the wild variation in provision across the UK. When it comes to autism, the “postcode lottery” is thriving.

The question of how much of a role funding, and the starvation central government has imposed on local government, has played in all this goes unmentioned by the report but inevitably looms large.

Even though it came shortly after the financial crisis, when budgets were just starting to feel the squeeze before austerity got going in earnest, I’m told by the National Autistic Society that the autism strategy has brought about some improvement compared to what existed before.

Public bodies pay attention to the condition in a way that they previously didn’t. Even though service provision is terribly patchy, it once often didn’t exist at all.

However, as Harris pointed out, the well-meaning strategy’s impact has been “limited by national and local failings to invest in the specialist support autistic people need”. And in its tenth year, it would seem things are now going backwards.

“Taken together the responses provide a rich description of the large amount of work currently underway across the country,” is how the report concluded.

That’s not how I would have wrapped things up and it’s indicative of a worrying level of complacency at the heart of government.

I know, I know, plus ça change.