Autism Spectrum Disservice – the wait to be assessed and the way forward for schools

I put this Tweet out in early October:

This tweet seemed to be received with empathy – 1500 Retweets, 4,000 likes. The Tweet was seen 350,000 times. Of comments shared in response to the Tweet (follow the link here if you should wish to), I saw these 10 things in the responses:

  1. It’s a disgrace.

Plenty of people are ashamed of the current situation and concerned about the impact on their children or their students. Adults talked with sadness about their feeling of missing out on the opportunity for self-learning, self-advocacy and accessing services that can come with a diagnosis. Plenty of people put the blame for this at the hands of the Government.

2. It’s (almost) a national disgrace.

It’s a postcode lottery. Some Local Authorities see the patient within 12 weeks; others who live in the neighbouring Authority will have to wait years.

3. It’s an international issue.

Tweets from the US and Australia echoed the issue of unacceptable waiting times.

4. The wealth gap prevents parity…

Those who can afford it, get seen within weeks and have a diagnostic report in a handful of months. Those who can’t afford it go without.

5. …but going private doesn’t always help.

Even for those who can afford private assessment, there are NHS services that give less weight to a privately-sought diagnosis – the National Autistic Society share this as a concern on their website.

6. COVID’s made it all worse.

If waiting times were bad before, as this British Medical Association report from 2019 suggests, they’re really dire now.

7. We shouldn’t blame CAMHS.

Many people came out in defence of the individuals working with total professionalism, skills and commitment within under-resourced CAMHS services. Funding shortages, coupled perhaps with an increased awareness of the symptoms of autism (as well as, arguably, an increased social acceptance of autism) leads to more requests for assessment and less capacity to meet those requests.

8. Frustrations don’t end with diagnosis.

Frustrations with the service don’t end when you get diagnosed; plenty of people note the lack of services to support people even when they do have the diagnosis.

9. We’re pathologising our children.

One response was critical of people’s rush to diagnose, rather than to comfort, support or understand. Though not indicative of the majority of responses, it argues that fewer people should be seeking diagnosis in the first place.

10. 4 years isn’t atypical – and it’s not the worst either.

24% of respondents in a recent Autistic Girls Network study waited over 3 years for a diagnosis. Almost unbelievably, 7 children in the same study were found to have waited over 8 years for assessment.

Solutions

Where solutions were offered, they tended to be in one of 2 directions:

  1. Complain.
  2. Add capacity.

The British Medical Association report, itself tellingly called Failing a Generation, is startlingly similar in its summing up of how to improve the situation:

Solutions that support school leaders

Neither of these solutions offer immediate solutions for schools though. While systemic change and additional resources are needed in order to assess the high number of children in UK schools currently on waiting lists, school leaders cannot wait for systemic change. They need to act now, ensuring they can:

  1. Recognise the symptoms of autism in young people, making an informed judgement on whether or not an autism diagnosis may be likely if assessed.
  2. Understand the types of support that would benefit a particular individual who is pre-assessment.
  3. Create a school environment in which autistic children and young people, irrespective of diagnosis, can thrive and belong.

This is no mean feat. A positive step would not be under-qualified or inexperienced SENDCOs diagnosing their students with autism. I write this ss someone who started as a SENDCO knowing far too little to do the job well. However, progress would look like:

  1. A much wider range of autism services being open to working with children, young people and their families pre-diagnosis. This would include Local Authority outreach services working to support SENDCOs with their provision for a child, even if the child has not yet had an assessment for autism.
  2. Closer clinical partnership between education and clinical settings, i.e. for SENDCOs to discuss the children and young people they believe would qualify for diagnosis, gaining feedback from (i.e.) a paediatrician as to likely causes of, and supports for, the difficulties they describe. This might be a form of triage service, which all school leaders can access at the point of referral.
  3. Subsidised training for all SENDCOs and school leaders who wish to access it, to support them to recognise the symptoms of autism, putt in place support for children who may be autistic, and to create a suitable school environment for a neurodiverse school population.

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