Hi, I'm new here. I have a 10 year old boy who has struggled with social interactions and school for years, alongside out of control angry meltdowns. His school are convinced he is on the Autism Spectrum due to his unwillingness to communicate and his struggles to form friendships with his peers etc. He also suffers from social anxiety and doesn't like to go to school, refuses to try out of school clubs etc. We are currently in the process of trying to get a diagnosis. We attended our local CAMHs, and received a letter from the Dr there saying that in her opinion his difficulties were due to ASD, and she referred him for further assessment, BUT, we've been warned of a 18 month to 2 year waiting list! As he's due to transfer to secondary school next year, we felt a bit desperate, and have used our savings to pay for a private assessment. The result of that is the Dr saying that he has several autistic traits, which are the reason for his struggles at school (his anxiety leads to him shutting down and then these traits come to the foreground), BUT, because he was able to communicate and make eye contact with him, and because he showed an ability to use his imagination in their play session, he says he doesn't think he is fully autistic (he does change in the summer holidays when he's more relaxed and not stressing about school). This is slightly confusing news to us, and I wonder if anyone here can explain it? Basically we're being told that he has several autistic traits, and that these traits are enough to cause significant problems at school, and he advised us that the best way to deal with this is to see advice on the NAS website, but he doesn't have an autism diagnosis. Not even on the spectrum. Not aspergers. Just 'traits'. I'm confused, because I feel if he has enough traits to cause significant difficulty, surely this means he is on the spectrum, albeit at the high, functioning end of it. But the Dr says the fact he could communicate and showed imagination means he isn't. Please help me make sense of this. On the one hand, if he doesn't have autism then great, but on the other hand, where do we go from here in order to help him with what are nonetheless significant difficulties. Sorry for the waffle, just trying to work out what being 'on the spectrum' as opposed to 'having autistic traits' means.
Hi Commander Lark,
The diagnosis process is well known to be a very long one; with most people, I believe, it averages at being an 18 month to 2 year process in total. Much of this can be due to having a three, four or even five month wait between appointments.
Autism is diagnosed using several 'ADOS scores' which look at a wide range of issues on what is called the 'triad of impairments.' Significantly, the reason Autism is diagnosed using these methods is because Autism is a Spectrum Condition, which means that each individual on the spectrum can have very different levels of strengths and challenges in different areas to one another. These test scores may evidence that your son may score very 'well' (i.e. low) in some specific areas (such as his imagination and communication skills) but he may still score very highly (affected) in other areas. And therefore a diagnosis of Autism may still be appropriate and given to him on the basis of what and where (on the spectrum triad) his specific difficulties are.
What does worry me greatly is that a DR is actually saying that someone is 'not fully autistic.' It really does not seem to me to be a very knowledgeable, helpful or professional approach. I have heard a lot of strange and concerning things in my professional lifetime, but I have never heard anyone saying someone is not eligible for a diagnosis of Autism because they are not 'fully autistic.' Be concerned. The DR needs to offer you a more professional opinion than this, based upon evidence. The ADOS scores each have very clear outcome measurements, with clear cut off scores of exactly what scores indicate Autism, what scores are considered borderline, and what scores show little or no impairment, in various specific areas of development.
I would therefore continue the process of seeking a diagnosis from CAMHS because the Psychologists there will have experience of conducting Autism assessments and will be experienced at conducting ADOS tests too. As the experience of the Psychologists is also an important factor in determining how effective the testing process itself is. There is more room for error if your private DR does not have regular and up to date experience of assessing autism. And, with private specialists, it pays to research not only their 'qualifications' but also other important factors too such as do they have regular contact with colleagues, have they kept up with advancements in their field, have they kept up with continued professional development etc., unlike NHS Professionals who have to do all these things automatically and annually.
With regards to your fears about your son having no support in school. The SEN Code of Practice clearly states that a child does not have to have a formal diagnosis in order to access additional support. Therefore I would get in touch with the secondary school, inform them that you are in the process of awaiting an assessment and arrange to meet with the SENco there, well in advance of your son starting secondary school. Not having a diagnosis should not, according to the law, stop your sons future secondary school planning an effective transition and offering additional support in good time, as if he has a diagnosis. The idea being that each child should be treated as an individual, and therefore regardless of whether he has a formal diagnosis or not, his individual difficulties should be acknowledged and supported by the school.
Best of luck.
Hello, I just wanted to update. I persevered with the NHS route as you suggested, and he has indeed now been given a diagnosis of Autism Spectrum Disorder (Asperger's in the old way of labelling). Thanks for your advice. He now is getting support and help with transition to secondary school.
I know that getting a diagnosis can feel like a 'bittersweet' blessing but, its really great news to hear that your sons autism has now been fully acknowledged/formally diagnosed. Thank you for the update, its really lovely to hear that your boy is now getting the support he needs, especially with his school transition.
Well done you for persevering.
Best of luck.