Autism services are not fit for purpose

Northern Ireland’s vaccine rollout continues apace and collectively we can all start to plan for what comes next.

Many places around the world will be in the midst of the pandemic for some time but, all being well, NI will be into the post-pandemic recovery before the end of the year.

Identifying challenges will be easy, solving them will be more difficult, especially as cash will be tight – and the true economic fallout of Covid-19 will only begin when furlough and other business support schemes are wound down.

This means prioritisation. Better support for autism should be somewhere near the top of the list.

The inadequacy of autism provision is nothing new and, like everything else, what was tough in 2019 was made tougher in 2020.

What is unlike everything else, what sets autism apart, is the staggering acceleration of the challenge at hand – both over the past 12 months and in recent years.

Over the past decade, the prevalence rate of autism has gone up by 320%. Northern Ireland might have the highest rates of autism in the world – but it’s very hard to tell, because the support system simply is not coping and assessments are lagging behind demand.

Behind this increase in prevalence is the vastly greater knowledge and recognition for neurodiversity that exists, both clinically and socially, compared with 20 years ago. However, that knowledge has not been matched by investment in services.

The waiting lists for initial assessments and diagnosis are massive, and growing, causing a huge bottleneck at what is supposed to be the entry point for support. Initial assessments and diagnosis are what someone goes through before accessing whatever assistance they need.

The scale of this crisis is difficult to comprehend.

Numbers

Stormont just held a debate on autism services that noted the explosion in waiting times and called for long-term strategy to be brought forward by the Health Minister.

And those waiting times really are staggering. Per Sinn Fein’s Colm Gildernew, who tabled the motion: “In the quarter ending in December 2020, 1,010 children were referred for an autism diagnosis, and 387 received a diagnosis. As of that date, 4,495 children were waiting for an autism assessment, and, of those, 1,457 had been waiting for over a year. Those 1,457 children came from three trust areas: the Belfast Trust, Northern Trust and Western Trust areas.

“It is important to remember that delays in receiving a diagnosis affect adults as well as children and young adults. At the end of February 2020, 997 adults were waiting for an adult autism assessment. Too often, the wait to get a diagnosis is just the first step; there is a lifetime of struggling ahead for the families of those with autism.”

This has led to a two-tier system. Individuals and families that are able to pay for private assessments can move through the diagnostic process and on to actual support very quickly.

Anyone who cannot afford this is stuck waiting, often for years.

The existence and ongoing operation of a national health service is, and should be, a source of pride for the whole UK (including Northern Ireland) but gaps of this scale show that certain channels of public health and social care are currently inadequate. This must be addressed.

The level of challenge varies between the different health trusts but rebalancing will not fix this matter. The dedicated resources within the health system as a whole currently does not have sufficient capacity.

Kerry Boyd, CEO of Autism NI, said ahead of the debate: “As a charity we have been lobbying the MLAs and All Party Group on Autism, which we are the secretariat for, for the past number of years about the unacceptable waiting times that both children and adults have to [go through to gain an assessment.

“Today’s debate really focuses on the surge in private diagnoses that is happening in Northern Ireland. We as a charity feel this is unacceptable. It is unacceptable that adults and families have to find that money from somewhere in order to get a private diagnosis… in order to access those vital supports and, in particular, early intervention…

“We also know that the Covid-19 pandemic will have exacerbated this situation and there is a huge backlog of both children and adults waiting for a diagnosis.”

What next

The Assembly’s debate on autism services was a collegiate affair. Both the proposal and sole amendment passed with some critical discussion but no actual opposition. Everyone is on the same page, everyone wants the same thing, and the reasons why are obvious.

Some children have been waiting over two years for an autism assessment (some adults have been waiting over four years). It is understandable that some families choose to spend thousands of pounds on a private diagnosis.

But, if that is a difficult choice for many parents or individuals who might be worried about their finances, it is an impossible option for many others who absolutely do not have that cash to hand.

Moreover, early intervention can make a huge different to the lives and long-term prospects of people who are neurodivergent.

Each delay in diagnosis is therefore not just a challenge ignored, it is one that might grow.

Autism NI CEO Ms Boyd told the Irish News last month: “You need a diagnosis is to access support. So it’s causing a health inequality where families who can afford to get a private diagnosis basically get pushed up the ladder in terms of support services.

“Early intervention is key. Everyone knows you have to get in there to work with those children, the first couple of years are the most important. To delay something for two years is unacceptable.”

Ministerial view

Health Minister Robin Swann agrees. Last month he told Stormont: “Our health service prides itself on being available to all and free at the point of access. I contend that we are still in grave danger of undermining this essential feature of our health service. With ever-growing waiting lists, I question whether all of our citizens have adequate access to the health service that they need.”

Moreover, this week’s he told the chamber that: “The debate provides me with an opportunity to acknowledge publicly that I am acutely aware of the considerable challenges being experienced by individuals and families on waiting lists for autism assessments.

“I remind Members that the situation is unfortunately not unique to autism. As recently as Tuesday 13 April, I made a statement in the House in which I mentioned our "absolutely dire waiting lists". I said that the pandemic had highlighted fragilities in our health and social care system and acknowledged that one of the casualties is autism, which is being highlighted here today.”

He said there was a rationale behind the introduction of the current interim autism strategy – broadly covering 2021 and 2022 - but that he appreciates the need for a longer-term view, and that this will take account of those who live with autism and their families.

The minister also acknowledged that actions, rather than words, are now required. He said engagement has taken place to aid with strategic design, that this had informed the interim strategy and would also inform the longer-term plan.

However, there was also plenty of caution: “I understand… that Members and the public that we serve will expect a road map to improvement: that is what we all want to see. However, in the current climate, we must also manage our expectations of what can be achieved. Whilst we are optimistic that we are heading into a more positive climate that we hope to be able to refer to as "post-COVID", our services must recover and rebuild…”

Mr Swann knows that the ball is in his court. Autism services are stretched, and stretching further. A detailed, long-term strategy, with specific and measurable points of action, will not arrive for months, maybe not even this year.

And, when it does come, it will come in the context of a health service that has moved heaven and earth to tackle a global crisis that landed in its lap but, in doing so, has had to kick the can down the road on its own persistent weaknesses.

Whether autism gets the attention it needs remains an open question. Everyone agrees on what the answer should be – but the creation of a comprehensive, well-supported service remains in doubt.