Formal Diagnosis……plus ‘2 broken leg’ analogy rant

Last Thursday (19th January) a fabulous (private) psychologist (http://www.btss.org.uk/) diagnosed my son as being on the autistic spectrum and more specifically diagnosed him with Asperger’s Syndrome. She explained there was little doubt, asked alot of questions , tried to engage J in conversation ,saw some of his self stim behaviour (e.g. flapping at dust motes in the sunshine), his anxiety over little things ( e.g.couldn’t find his lego tree) and noticed his obsessions (Roald Dahl books and talking about Wii game.) Although tinged with a little sadness ( we realise although we can help J massively, it will never entirely ‘ go away), it also came as a relief… all the cr*ap taken from his last school, lack of support, lack of understanding , telling me he had no issues, was not on the spectrum and to look to home i.e. it was my parenting.

She also pointed out that although he gave no eye contact apart from when she came in ( but I had forewarned J someone was coming….won’t be doing this again…I forget they need to see J’s worst moments and not when he has been helped to be told ,well he would act like X if I didn’t tell him… they need to see him act like X!) and gave none for the rest of the 2 or more hours she was here… when CAMHS do the ADOS, the little box for ‘ eye contact’ would be ticked.We talked about all the things we had put in place to support j and she said this is brilliant for J long term as he is developing these into his own coping mechanisms. She has also pointed out ( which we knew anyway) that many higher functioning kids do not get a diagnosis under CAMHS- not for a good many years anyway…. mainly because of money. J is high functioning, he has also been helped ALOT at home to develop ways of deaing with things because I want him to be all that he can be. So at a time when CAMHS have messed up ( J not even on waiting list- messed up on their system- grrr!) and they are coming out on Tuesday to decide if they will even accept his referral- I am in huge doubts as to whether they will a) accept his referral and b) if they do , he will get the diagnosis that will help him get the support he needs.

To be honest I want to rant , complain and scream and invite Tony Attwood himself to come at look at out local services and assessment for autism and look at the higher functioning kids! In a local parent autism support group I know of 2 boys who have yet to be formally diagnosed- 1 has been through CAMHS assessment 2 x ( he is now 7 I believe) and the other boy is coming up to 9….it is only recently that an autism outreach worker has agreed he is on the spectrum. These 2 boys and their parents have been through hell- they have been told they are neurotic, stupid, making mountains out of molehills, that there is nothing wrong , their children don’t need support…. but these parents have also been the ones that have ( like me) held their boys after a bad day at school, helped with the bullying of their child, fought and fought and fought for their boys since they were younger than my J now. I am no expert ( their parents are) but these boys seem very ‘ typical’ for children diagnosed with Aspergers… obsessive, advanced language, lack of social ‘ niceties’…. both parents have said how similar j is to them …. yet they have no diagnosis. I was absolutely gobsmacked that CAMHS had not diagnosed them. That was until recently… when i am still gobsmacked but I understand why these boys do not have a diagnosis…..

A child I know has recently been diagnosed with high functioning autism… they would say Aspergers ( he is verbal- but he does not have advanced language skills or different prosody) but they are fading this diagnosis out. That in itself annoys me DSM V is only in proposal stage ( not due to come into force until May 2013!) but out local team have decided to implement it anyway it seems. Like I keep saying , I am no expert, I am not clinically trained but I have worked as an ABA tutor for 2 children with autism for over 10 years, worked with adults on the spectrum for 6, specialised in autism in my psychology degree and have a child on the spectrum. The boy in question is adorable and he also has ‘ savant’ abilities which i think sometimes mask his more autistic traits if that makes sense. Apart from the fact he is verbal and shows these savant abilities he shows no other signs of ‘ Aspergers’…. he does not want to interact at all- oblivious to his peers ( I have been led to believe AS kids want to interact, but don’t know how, or do not interact appropriately..,.like J, like the 2 undiagnosed boys), he does not obsessively question, he does not have anxiety, he is not fully toilet trained ,he is obsessive about certain things ( microwave etc), he is awaiting a 1:1 statement at school ( let’s face it- many parents of AS kids will tell you- a school often misses or refuses to accepts an Aspie child’s difficulties never mind that a child needs 1:1 support.) To me he is moderately autistic with savant abilities. Why is it any of my business what diagnosis he gets? Firstly, none really i suppose – i shouldn’t be so nosy! BUT and that is a big BUT it basically says to me that CAMHS are diagnosing moderately autistic children as ‘ High functioning’ so that in reality a) these children will not necessarily get all the support they need as they will be considered more high functioning than they actually are and b) What about those kids who actually ARE high functioning…. like my boy? or the 2 boys at the local support group? Ahh yes- they will remain undiagnosed for as long as possible ( until they become ‘ challenging’ for someone other than their parents) and their parents will be left angry, depressed and desperate and the boys will miss out on vital support. It seems to me they have just shifted the ‘goalposts’ for diagnosis to meet their own budget. Ethical? i don’t think so!

To me it is like this :- ( analogy here!) a child with 2 broken legs ( severe- moderate on the Autistic spectrum) will get a diagnosis… a child with 1 broken leg ( HFA / Aspergers).. there is nothing wrong with you- you can go through life with a limp! we can’t afford to diagnose or help you… get on with it and be grateful you don’t have 2 broken legs!

I am sorry this has offended anyone. I don’t think it should be a competition as to who has the most ‘ autistic’ child… every child on the spectrum is so different. Once you have met once child with autism, you have met one child with autism as the saying goes. BUT, why is is then we as parents, believe in this but professionals will just tick boxes without seeing the real picture? I just think it is unfair for children to struggle for years without support because of opinions of non ASD trained school teachers ( that ed psychs are willing to listen to… see my earlier posts) and because there is only the money available for the most ‘ severe’ cases. This usually is in line with the most severe non compliant , challenging behaviour in a school environment than actually based on any real assessment of a child’s struggles or real difficulties. Many AS kids mask their symptoms at school and then ‘ explode’ at home…. their ‘ symptoms’ are no less severe in many ways ( apart from advanced language… but anxiety often renders them mute anyway…. cue angry {untrained} teachers saying .. “we know he can talk, he is just being naughty”) and add to this their desperate want to interact but often rebuffed by peers… leading to low self esteem and depression , school refusal, self harm and sadly, thoughts of suicide I am told. And lets not forget that As kids often have huge sensory issues too…. my son does… bright lights, loud noises, textures.. especially in his mouth- often refusing to eat… but guess what? there is no money for OT assessment and help either! Add to this the general public’s ignorance about Aspergers…. there seems to be a little ( not alot I grant you) more understanding for autism itself. And the good old comment ‘ he looks perfectly normal!’ is still said…. since when did anyone on the spectrum ‘ look different???’Does it still seem like they can still ‘ limp’ through life ok with that 1 broken leg now? I didn’t think so…. but there are 1000’s of kids expected to.

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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