Autism diagnosis & a question of severity

questioning the NHS idea to limit autism diagnosis to only the most severe cases.

With the NHS discussing the idea of restricting an autism diagnosis to only the most severe cases, I have to ask how do you measure severity?

My heart lurched as I read the BBC article on the idea being discussed by NHS South West London to limit autism diagnosis to only the most severe cases. Whilst no decisions have been made, it is concerning that this is being discussed as a possible option for easing the pressure on the service where waiting times for an autism diagnosis is more than 10 months.

it seems that once again the need for a diagnosis for many of the children with autism is being questioned

After the SEND labels & pushy parents debate earlier this year, it seems that once again the need for a diagnosis for many of the children with autism is being questioned. And once again, it is coming down to a judgement of who needs a diagnosis most.

With limited resources to support those with autism, it seems like the question in both schools and now the NHS is one of severity.

So how do you measure severity? 

As a spectrum condition, Autism impacts each individual differently which means that the needs of those with autism varies greatly. It is also well documented that early diagnosis and support to address those needs makes a huge difference to achieving long-term outcomes for a child and their family.

With this in mind, the question of how you measure severity is critically important. From my perspective, this is not an easy one to answer.

Is the measure based on the short-term and immediate needs, or the longer term impact of failing to get the necessary diagnosis and support?

Is a child with learning disabilities more severe than a child with ongoing anxiety?

Is a child who is bright but unable to access education due to sensory overload more severe than a child who sits in the corner and retreats into themselves because they can't deal with the social pressures of the classroom?

Is a child who is challenging in class because they struggle with classroom demands more severe than a child who masks at school and then explodes at home because they are struggling with their inability to control the world around them?

To me, each of these cases is severe.

Each child has unmet needs, and will struggle without the insights, understanding and support that an autism diagnosis can bring 

Each child has unmet needs, and will struggle without the insights, understanding and support that an autism diagnosis can bring. Each child will have families, and possibly teachers, around them who are struggling to cope with impact of unmet needs. Each child will be challenged in achieving the best possible long-term outcomes without the interventions that a diagnosis can bring.

Do we really want to put ourselves in a position where we are asking which child's unmet needs is more important, or severe? Or even worse, wait until they develop a mental health issue before they can get a diagnosis and support?

What happens to those who don't meet the severity criteria?

Should this idea become a reality, I have to ask what would happen to the many children whose needs were not deemed severe enough to meet the criteria for diagnosis.

The sad truth is that this is already happening unofficially already. We were initially told that paediatric appointments would only be possible for priority cases when we first asked for a referral to a paediatrician for an autism assessment. With my son in danger of exclusion from school, I questioned this and fought to be considered as a priority case. In the end we went for a costly private assessment, put in our own application for an EHCP, and hoped for the best. We were lucky and two schools later, have been able to find the right support but it still came at a high price to both my son and myself as we struggled with the anxiety of failing school placements whilst trying to get a full assessment of all his needs.

We were lucky as many families aren't able to go private, and struggle for years to get help for their children. A common theme when talking to these parents about their experiences, is that without a diagnosis they were not able to get the necessary support.

The reality is that without a diagnosis these children and their families continue to struggle, and the impact of unmet needs continues to grow until it reaches a crises point.

I have seen parents despair as a result of not being able to help their children, children struggle with crippling anxiety, and other children branded naughty or lazy because of their continued struggles.

I spoken with people, who like Nicola Clark, have struggled with anxiety until they were diagnosed as an adult, and couples who have admitted to the impact on their relationships when one of them has gone undiagnosed until adulthood.

The sad truth is that without a diagnosis, these children often continue to struggle and fall through the gaps, not understanding why. As they get older this can become harder to deal with, and can quite often lead to anxiety, depression and other mental health difficulties. At this point the impact of the challenges, and the costs to support are much higher.

Do we really want to wait until the crises point, before we step in to help?

Is there another way?

With limited resources and the criticality of early diagnosis, we need to find another way to ensure that each and every child with autism gets the opportunity to be assessed so that they can get the support that they need. 

Earlier this week I had the opportunity to explore how technology by IBM could be used to help those with autism, and potentially even help in the diagnosis process (similar to what has been achieved for oncology and trialled for dementia). The possibilities are quite exciting.

This could certainly go some way to streamlining the diagnosis process, however I believe that we will continue to struggle until we find a way to bring together the many different professionals involved in making an autism diagnosis. To me, the current process seems fragmented, disjoined and lengthy. It also does not seem to be working for educators, health care professionals or parents. We need to find a way to make it simpler (and thus cheaper) for all involved. 

For me, the question is not how can we limit those who have access to diagnostic services, but how can we can change things to ensure that we are able to assess each child who may have autism with the limited resources available.

I believe that together we can stop this idea from becoming a reality, as it could be a very unwelcome precedent. Please share your thoughts, either on this post or twitter, so that others may understand how big an issue this is for so many of us. #autismdiagnosiscrisis

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