diagnosis

I think the diagnosis, when it comes, must be a very different experience from family to family. I can well imagine that in some cases, it comes as quite a shock. For us, receiving the full diagnosis was just the final, unwanted tick in the box. We had been in receipt of a working diagnosis for six months and Blue's paediatrician had already told us that he had not seen anything to change his mind. So when we walked into his consulting room, we did not expect to hear anything new or surprising, and we didn't.

The road to diagnosis

If you can discount the period before we raised our concerns with our GP, our road to diagnosis was a short one. My husband, The Sensible One, studied behavioural neuroscience at university and I studied biomedical science. This does not qualify us to diagnose our own son, but when those first concerns reared up, we were programmed to analyse and research what was in front of us. The final straw which propelled us to book an appointment with our GP was Blue's apparent speech and language delay. We walked into the GP, laid out our concerns and asked to be referred to a specialist.

Two months later we had a consultation with a consultant paediatrician at our local Social Communication Disorders clinic. We received the working diagnosis on the basis of what was observed at that first appointment, which lasted about an hour and half. The consultant took a history, went through a questionnaire (possibly, the M-CHAT), and he and his speech and language therapist (SALT) observed Spike's play and general behaviour.

A few months later, Blue was invited to attend a Social Communication Disorders group which consisted of 4 clinic-based sessions over one month. They were led by a SALT and were a repeated series of highly structured activities, including free play, parent-led play and a sensory activity.

Between the initial appointment and the diagnosis appointment, we saw occupational therapists, physiotherapists, SALTs and completed an alarming number of questionnaires. The outcomes of these appointment were fed back to the consultant and contributed towards our diagnosis.

Our diagnosis

We had been sent the various reports as they were written, so when we saw the consultant again, he asked if we wanted him to go through them. We said we did not. He then told us that what he had seen and what had been reported to him by us and by the team was consistent with a diagnosis of Autistic Spectrum Disorder.

As you will probably know, autism is a lifelong, pervasive developmental disorder and it would therefore not have been appropriate for the consultant to be full of light and laughter - or empty reassurances. However, I was quite surprised that he seemed unwilling to allow us any hope or optimism, mainly because the NHS seems unable to get beyond the fact that they can't accurately predict the future. Obviously, if we ask the question "Will our son be functionally independent and lead a happy life?", the correct answer is "We don't know." But, I really don't see why they can't then go on to offer the benefit of their experience. Based on the progress he has made, and had already made at the time of diagnosis, we now know that the outlook for Blue is good. There is a good chance he will be able to go to a mainstream school, that he will be functionally independent as an adult and that he will learn to talk and use language appropriately.

Obviously a "good chance" is not the same as something definitely happening, but as a parent I think it is very, very helpful to be given some sort of an idea of what the future might or even will likely hold. Most people are not stupid, they know that "likely" does not mean "inevitably" and "might" does not mean "definitely". Of course, the flip side of this, is that parents should be told if there is little chance that the child will be functionally independent, learn to talk and so on. That would be so much harder to hear, but it should be heard. Mind you, I only have my own experience to draw on, perhaps other people have been given more guidance.

Even when the prognosis is poor, I think the medical professional giving the diagnosis should try very hard to find something hopeful and optimistic, though truthful and realistic, to say to the parents. An ASD diagnosis is a huge mental and emotional burden to give to a parent and they will need strength to cope with it. Being told that, for example, there is a highly experienced team of professionals waiting to help them do their best for their child would, I'm sure, be a welcome thing to hear.

Treatment options

The most practical form of support that can be offered at that early stage, I think, is some sort of professional overview of the treatment options available. Following our diagnosis, we had an appointment specifically to go through this. In reality, all it amounted to was the consultant handing over a piece of paper listing some treatment options and a second piece of paper which was a print-out from researchautism.net (a fabulous resource, by the way) grading various interventions and treatments. I was asked if I had any questions about any of the treatments and that was the end of it.

I can't remember what questions I asked, I think it was something to do with ABA, but I do remember that the responses were so wishy-washy and non-committal that I didn't bother to ask any more.

I hate to think about some poor parent who has just been landed with an unexpected diagnosis and who has never heard of ABA or AIT and is then asked if they have any questions about this webpage.

To sum up, the whole diagnosis process seems to leave parents thinking "What now?" which is a horrible position to be left in. I would like to see parents leaving the diagnosis appointment with a suggested, personalised action plan in hand. I know it's trite and not at all the same, but a doctor would not say to a parent. "I'm afraid your child has cancer. I can't give you any idea of the prognosis. Here is a list of places where you can research treatment options."

Ports of call

My suggested first ports of call following a diagnosis are:

The Complete Guide to Asperger's Syndrome by Tony Attwood
More Than Words by Fern Sussman
The National Autistic Society
and, as I mentioned, Research Autism is a great place to get reliable assessments of treatment options.