Ok so I know I said my next post would be a follow up to the shipwrecked post but that’s taking a while so here is one about the Bean’s formal diagnosis.
This is a post about a rite of passage in most family’s autism journey. It is the day when a formal diagnosis is received for your child. Through the autism massive (our name for the group of other families we have met along the way on this journey) we have heard about many different diagnosis experiences. They all differ. Some are positive, some are negative, some are frustrating but all the emotionally charged. This is the story of our D day. It’s been over a year now since the Bean was formally diagnosed so this is what happened that day.
My wife and I already knew the Bean had autism prior to his formal diagnosis. The process was a gradual realisation punctuated, for me anyway, by one “penny dropping” life changing day that I have written about before. We had both accepted our son was autistic about 9 months before he got the official diagnosis so in some respects the formal diagnosis it was errr just a formality. That being said it was not quite the casual confirmation of our suspicions that we expected.
The wait for an autism diagnosis can be long. When we first requested to see a specialist through our GP we were told it would take at least a year. This was completely unacceptable to us and, thankfully it was to the GP as well, he suggested that he refer us out of the area which he can do if there is a long wait locally for services. He asked us if we had anyone we wanted to see. One name had already been suggested by a family friend in the know: Gillian Baird.
Dr Baird’s unit was based in Guys and St Thomas hospital in London so it was not too far for us to go. We had both researched her and she is perhaps the foremost expert on autism diagnosis in the UK. She has an OBE, a long distinguished career, has written books, published a multitude of papers, gives talks and is generally the dog’s bollocks when it comes to all things related to autism diagnosis. Our GP came up trumps and got us in to see her. But it still took nearly nine months to get the appointment.
During that 9 months we had been reading up on our son’s condition, meeting with other families, engaging with educational professionals about Beans progress and generally immersing ourselves in autism world. Everything we learned just confirmed our conclusion that he had autism and by the time D day loomed there was no doubt in our minds that the diagnosis would be as simple confirmation of what we already knew.
The cruel glimmer of hope
That being said though I think we both were clinging to some slivers of hope. For me I was secretly hoping that Dr Baird would tell us that: “Yes Bean is autistic but he’s really bright and with the right care he will go on to do wonderful things in science or engineering or IT.” The realist part of me knew that she could not possibly say exactly that but I was kind of hoping that she would imply or hint that he was likely to be one of high functioning autistic people who can achieve well academically and lead relatively normal lives.
So we trotted up to London the night before and stayed overnight nearby. My father and mother in law joined us and they would be looking after Zoo whilst my wife, the Bean and I went to see Dr Baird. We arrived on time and shortly were met by Dr Baird. She is a woman in her late 60’s, had a kind but professional manner and she spoke very poshly. The kind of voice that exuded utter confidence in her own abilities but at the same time was not condescending or patronising. A good start!
I remember thinking that I want her to understand right away that we were not precocious parents that were in denial. Part of me needed her to see that we had already accepted that our son had autism and that we wanted her to give it to us straight. I can’t remember the exact words I used to convey this message but I remember seeing a look of some relief on her face. I guess a tough part of her job must be breaking news to parents who don’t want to hear the truth. She must have seen many parents cry or get angry at her so I am sure I saw relief on her face when she realised that we were not going to be like that.
So whilst the Bean played with some of the many toys in her room we went through the preliminaries and discussed what was going to happen today. The diagnosis consisted of three parts. The Bean would go off into another room with a speech and language therapist and an educational psychologist. They would run him through a series of play based tests. At the same time Dr Baird would talk to us about our experiences with Bean (this parental evidence is an important part of the diagnosis) and then finally the third part would be that, after a quick conflab, Dr Baird and the other two members of her team would come back and deliver the verdict then and there. All in all it would take about 3 hours.
Of course prior to this Dr Baird had been privy to a whole variety of reports on the Bean that had been written over the past two years. She had access to the speech and language reports nursery school reports, the reports from the early year special needs educational professionals and probably some others I have forgot about. This combined with her interview of us and the formal play based testing would give enough evidence to form a diagnostic opinion on the Bean.
So Dr Baird asked her questions and we answered as best we could. Throughout she took the time to reassure us that we were doing well. She assured us that we had done everything we could and that the Bean was lucky to have us. Now this very well may have been just a good bed side manner but I’ll take the praise anyway. Thank you Dr Baird that meant a lot.
The jury deliberates
So after the Bean had finished up with the other two, they and Dr Baird went off for a conflab for 15 minutes or so and the Bean came in with use and played with the toys. I can’t remember what me and my wife talked about but I recall what was in my head was a worry that we would not get a diagnosis. I managed to half convince myself that Bean was not acting autistic enough today and we would be told there was nothing up with him. This filled me with fear because then what would we do? We knew there was something very different about our little boy and if it was not autism then we would kind of be back at square one. I guess we had actually emotionally invested in getting a positive diagnosis and so now it was crunch time my nerves began to fray.
When they all returned I could feel my heart rate quicken. It was the same kind of feeling when you are opening your exam results. Thankfully they didn’t piss around or string it out. They knew damned well we were nervous as hell so very quickly the words were spoken “Your son shows clearly behaviour consistent with a diagnosis of autism”. First I felt a wave of relief. That might sound odd but it was definitely the first emotion I felt. And then it hit me properly. My son has autism, no if’s not buts no maybes here was probably the UK’s best diagnostician in autism telling me that this was the case. My son is autistic. And despite the initial relief, despite already knowing that this was true for months before hand those words still hurt like a bastard.
It was something about a Professional saying it that made it completely, harshly and unequivocally real. My son is autistic, he is an autistic person and he always will be from now and forever. We knew enough to know that this condition would be hard on him and us we had already shed many tears of worry over the future but it had all seemed a bit surreal up until now, now this was no longer a “possible thing”, not a “might have autism” not even a “looks like he has autism” it was completely real. We have an autistic child.
The bean and the egg yolk
Dr Baird went on the elaborate a bit about the Beans level of autism as far as they could tell. She was careful to caveat most of what she said by informing us that he was still very young and there is no set pattern for how autism will develop. So things could change and his potential was yet unknown. But as far as she could tell at this stage he had “significant” impairment in social communication and clearly significant language delay. She described autism as a fried egg. With Asperger’s and other milder forms of ASD as the white of egg with classic autism as the yolk. Bean was in the yolk she said.
So there went all our hopes for a mild, “he’ll be fine with a bit of help” type diagnosis. Significant autism. I think it was at this stage that I felt a tear rolling down my cheek and my wife was also teary eyed. It was not the tragic, woe is me, anguished pain type tears. Just a gently out letting of emotions in liquid form. It hit us both harder than we expected especially the last sliver of hope being drowned in a metaphorical egg yolk. As I said it hurt like a bastard.
So after a few words of wisdom from Dr Baird about things we could try we said our good byes and trotted off. We met my in laws in the canteen down stairs. Ordered some food in a daze. Sat down and made some phone calls. I think I told my mum first then I phoned my father. Telling my mother I was quite matter of fact and composed but for some reason I broke down telling my dad. I don’t know why but this had happened couple of times before. There is something about telling my own father about my son that really tugs at my heart strings. I can talk to anyone else and remain fully composed but sometimes with my father something happens inside and the emotion just wells up. So I had a bit of cry, pulled myself together and that was that. That was D day. We made our way back to the car and drove home to begin our lives as an official autism family.
So what is the point of the above post? Well firstly it is hopefully just an interesting thing to read. It is one of those quite intense human experiences that no one expects to go through. So hopefully just as a tale of human interest it stands on its own merits as worth reading but further to this I wanted to share a positive message about diagnosis days. Despite the strong emotions it was a positive experience. We have met many other parents who have been through this process and it is with great sadness that I have found that not all diagnosis experiences go so well.
We have heard some real horror stories about shitty doctors, dismissive staff and then a wishy washy vague half diagnosis at the end. This is incredibly frustrating for the families involved. We were lucky, very lucky. We had a good GP who knew the system and wanted to help. We also, by chance, had some good advice on who to go and see. To our own credit we also pushed quite hard to get this outcome as well.
So I guess for those reading this that might be starting this process know that it can be a positive experience and you deserve for it to be so. Don’t take second best, don’t be fobbed off with vagueness, delays or shitty behaviour. It will always be a hard day, nothing can sugar coat hearing that one’s child has a lifelong “condition” that will almost certainly increase the challenges they face in life. But it need not be a completely crappy experience in fact it should not be. It should be the end of one journey and the start of another. It is then end of “does my child have autism journey?” and the beginning of the “how do we reach my child’s full potential journey”. This transition, although emotionally charged, should ultimately be a positive one. Don’t settle for second best and really don’t put up with rudeness and other poor behaviour, you and your child deserve more.