by Guy Shahar
Published: 27th April, 2016
Before starting, I should say that there may be many very dedicated and passionate people working in the NHS supporting autistic people, although the system in which they have to work must make it a colossal challenge for them to retain both their position and their dedication over the long term. This article is not intended as a criticism of any individuals. Yet, it is my duty to be honest about how the NHS as an organisation has dramatically failed us in its duty to provide meaningful care for our son. I know this has been the experience of many other families as well.
I say in the title that we opted out of the NHS, but I’m not sure that’s the best way of putting it. In order to opt out of something, there needs to be something to opt out of. At first, they told us repeatedly that there was nothing wrong, and when we collected the evidence that there was very clearly something unusual in his development, they effectively told us that we were worrying over nothing and that any anomalies were down to our not knowing how properly to discipline our child! Finally, after a lot more insisting, we were sent to a paediatrician (after a wait of several months), who gradually started to send us for more and more checks and appointments with specialists, which all seemed to be the same – a lot of talking about how things were, leading to a report which simply laid out what we had said about how things were (with a few generic and not very useful recommendations) and a follow up appointment to talk about it again in a couple of month’s time. The tests and examinations were worse – they were often conducted with no sensitivity to our son’s condition and provoked deep anxiety in him.
The crux of our problem was that the NHS was now playing a huge role in our lives, but its main goal was simply to diagnose. We thought at the time that was natural, reasoning that in order to be able to do something for us, they would first need to intricately understand the nature of our situation. So for a while, we played the usual game of asking them for action and then chasing them to deliver it when it seemed elusive. We submitted to the long and arduous days in the hospital, the unexpected nature of the investigations, the endless waiting, the unceremonious behaviour towards us (there are many details of our very unfortunate experiences with the NHS during this period in my book), naively expecting that at the end of it all, we would finally have access to the expertise that would be able to help our son and our family and make a meaningful difference in our lives.
But, as many have found before us, it didn’t come. The norm seems to be to go full out to be able to put an accurate name on the “problem”, and then it suddenly all goes quiet. A few hundred pounds a month in benefits, an occasional batch of under-resourced and over-populated Occupational Therapy or Speech and Language sessions, the odd word of consolation, and that’s it. As one American commentator on health issues put it, all we get from mainstream health services is “diagnose and adiós” (it sounds better in an American accent – they can somehow get those 2 words to rhyme…). You’re on your own. You’ve got the Internet and word of mouth, and that’s about it.
Fortunately for us, we cottoned on to this quite early on. We understood that if the people we were looking to as an authority on these issues were doing little or nothing to tangibly improve the lives of people with autism, then we would never get very far by depending solely on them. We needed to take matters into our own hands, because they were clearly not in theirs.
The “opting out” was more psychological than anything else. It was opting out of the mentality of looking to doctors for a way forward, or expecting any meaningful changes from them. Once we made that shift and assumed responsibility for our son’s well-being ourselves, our dealings with the Health Service were more straight-forward. We no longer needed anything from them. We went through the diagnosis process, but without any pressure or stress, letting them take the lead at their own pace. By the time we finally got the assessment (more than a year an a half after we raised the issue), it didn’t mean much to us. We already knew what his condition was, and we understood much more about what that actually meant to him than most of them did. We had taken him abroad to a clinic that had spent 3 weeks simply playing with him in a particular way, and had, through this, brought about phenomenal improvements in his quality of life. We were implementing a similar programme at home and were continuing to see great results in his happiness, his connectedness with us, his resilience, his ability to regulate himself and so on. The doctors couldn’t believe that he was only just registering as autistic, having expected after his initial appointments that he would easily be on the extreme end of the spectrum. They were happy for us, but when we offered to tell them more about the clinic we had been to, they declined, saying, “we have our own ways of dealing with things over here.”
I will write in another post about what happened at that clinic and how it played such a huge part in our lives. It is also detailed extensively in my book, Transforming Autism, which (I am hoping) will be released soon. But the purpose of this article is to urge parents in a similar situation now to the one we were in at that time not to limit their horizons to what is available from the NHS; not to spend their valuable energy worrying about when the next appointment will be or about chasing this specialist or that. Yes, pursue all of those things, but knowing that they are not the likely to be the primary means of successfully helping your child. That lies with us, the parents, and is perhaps the greatest responsibility of all.
It is through great fortune that our family was lucky enough to find treatments that have changed our lives. Through this blog, I hope to share some of what we have learnt. Please share, subscribe, participate in the comments and visit regularly. I intent to use the comments left by visitors as a way of understanding what sort of content would be useful, and they will inspire future posts. I look forward to reading more of them.