Why Playing The Autism Diagnosis Lottery May Be Getting Even Harder

Kel Autism, It's a Tink Thing 4 Comments

“Why would you want to label your child?” This is a question many parents are asked when it becomes known that they are having their child assessed and are possibly seeking a diagnosis of autism.

The thing is, no parent wants to label their child. But, to those of us who are going or have gone through the diagnosis process with our children, getting that all-important report, signed by those qualified to make that judgement, is so many things. I wrote recently about how getting an autism diagnosis is not a ‘magic key’. However, it does make some things possible to access, such as an Education, Health and Care Plan (EHCP) or funding above and beyond the standard school SEN budget.

But, what a diagnosis really does is much, much more than that. 

For us, getting a diagnosis for Tink meant having a reason that explained her delayed development, her behaviours and her lack of social skills. It helped us to move on (a little) from the worry and the guilt about our own parenting – that the way she was was a result of something we were or were not doing. Her diagnosis explained so much and allowed us to prepare for the future somewhat. If we know why she does the things she does and, that often she can’t help the way she behaves because of a legitimate condition, then we can try to find strategies to help in the future.

Her diagnosis has helped us to explain her behaviour to her brother. Although sometimes he gets frustrated with her, he now has something tangible, some understanding of why.

As a result of her diagnosis, and doing all the reading in the weeks, months and years since, we now know that autism often goes hand-in-hand with other conditions such as ADHD, PDA and epilepsy. We now know to be aware of these in case she begins to show signs.

We also now know that mental health issues are common in children and adults on the spectrum. According to Autistica, research shows that almost 80% of autistic people experience conditions such as anxiety and depression. As mental health issues already feature in our family, thanks to Tink’s diagnosis, we appreciate that she has a much greater chance of developing a mental health condition and can be vigilant about spotting the warning signs.

So, why am I discussing this?

Over the last couple of days, news has broken and spread around the autism community that one health trust in London (South West London St George’s Mental Health Trust) is considering plans to stop assessing children for autism unless they already present with a mental health condition such as depression, or a condition such as ADHD for which they are being treated. And why would the trust do this? To save money, of course. Their big idea is that children who are ‘just autistic’ (as opposed to being ‘autistic and depressed’) can be managed by schools and other services and do not require a formal diagnosis.

I have major issues with this plan:

  • Schools can barely manage children who do have a formal diagnosis, let alone those who are showing difficulties but are undiagnosed. Autism training for teachers is barely touched on in training (I believe it should be mandatory for every teacher to have a reasonable level of specific autism training). Few teachers understand the condition well enough to know how to tackle it in each individual child they come across and children are struggling every day due to a lack of support, resources and funding. And these are the children with a formal diagnosis.
  • ‘Other services’. Right. These would be the services that we still struggle to access even with a diagnosis? These would be the same services with waiting lists for appointments that are months and months away? The services that are already at breaking point due to understaffing and underfunding? Yep. I can see how easy it would be to access these services without a formal diagnosis! *Insert sarcasm here.
  • Cases would be judged on ‘severity’. But who can really say if Child A is ‘more severe’ than Child B, just because Child B doesn’t also have a mental health condition – yet? This does not mean that Child B and their family are any less deserving of support, services and funding or that Child B’s autism is any easier for any of them to live with. Research has shown time and again that early intervention is the best thing for autistic children and their families. Judging assessment potential on ‘severity’ will exclude so many families from that crucial early help and support that is so vital.
  • Perhaps most importantly, are we seriously expecting our children and young people to reach crisis point before even assessing them to see if a formal diagnosis can be given? Do South West London St George’s Mental Health Trust really believe it’s better to wait until a child has a mental breakdown or self-harms, possibly requiring lengthy treatment in hospital or other institution? (That’s if they can get seen by CAHMS in the first instance.) Or worse, end their own life because they cannot cope any longer with unexplained feelings and behaviours, marking them out as different in the eyes of their peers and even themselves? Is this really preferable to spending time and money on an assessment and, hopefully, a diagnosis? A diagnosis that gives their feelings some validity and helps them to make some sense of who they are, possibly preventing serious mental health issues in the future.

South West London St George’s Mental Health Trust are just proposing these cuts at this stage. If enough of a fuss is kicked up, maybe it can be stopped before serious thought is given to this plan. If it isn’t stopped, it won’t be long before other health trusts jump on the cost-cutting bandwagon and that leaves me incredibly fearful for the future of autism diagnosis in this country.

Here are some more thoughts on this subject via a Blog Hop:

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How mentally unwell does my child need to be to get an ASD assessment? /Becci - The UnNatural MotherThe Breastest Newskeepmum Recent comment authors

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Becci - The UnNatural Mother

I hope the beautiful Tink has stopped throwing her toys around after last weeks FB picture. My children are not on the spectrum but I too had to fight for a diagnosis for Harry when i clearly knew he had asthma and it took him to have a full scale asthma attack for someone to finally admit he had. Why they would need to wait for a child to show sign of mental health issues before diagnosing ADHD or autism is just totally wrong. Just keep fighting Mama #postsfromtheheart

The Breastest News

It’s so wrong how they’re trying to stop people getting a diagnosis. It’s false economy trying to save money as like you said mental health issues in people with autism arise such as anxiety and depression and further down the line they’ll be knocking at the NHS door asking for help. I feel an early diagnosis can often help the slow down of mental health issues as there’s an explanation as to why you think different, act differently etc. My hubby has autism and wasn’t diagnosed until he was an adult (30s) and he feels so much better now and… Read more »


This would be such a step back for mental health and for spectrum disorder diagnosis.
Getting diagnosed with either (or both!) is hard enough, especially in children.
Great post, really hope it doesn’t go ahead.