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.
There are a number of criteria that a child or adult must meet to have a diagnosis. Usually validated tools are used. Did this doctor use any screening tools and give a written evaluation?
Even if your son is not autistic he needs to learn strategies to manage his anxiety if he's going to function. Sadly this kind of wait to get assessment and assistance is real and problematic. If the doctor gave a written evaluation he should have made recommendations on what might help
We're awaiting the written report. Our appt was 2 weeks ago, so hoping it'll get emailed through soon. I'm getting impatient for info & advice, hence looking on here, and have spent the last 2 weeks puzzling over our predicament! Really curious for further information on the different approaches for a child with 'only' autistic traits (he finds stuff so difficult, and we find his meltdowns so hard to cope with)! I'm dreading the return to school, as he struggles so badly, and without anything concrete to report from our dr appointment I'm worried that school will dismiss his behaviour as just 'naughty' if I tell them he's not got a diagnosis (they've been good so far because they've been convinced he's got ASD). Thanks for replying QuirkyFriend
My SO and I have just done day 1 of a 2 day course called Framework for Autism in New Zealand, in response to his 16 y/o daughter now having a diagnosis. We've known there were issues for about 4 years and we had started using lots of the techniques before the diagnosis because it was necessary.
The slap head d'oh reminder to us today was to ask the kid about their experience and see why they think or do things. Much of the course focused today on some communication tools to help us neurotypical people work with people with ASD.
We're struggling with personal hygiene issues (she won't wash or change her clothes and resents being told but it's not OK to smell like a pole cat) and next time she's staying I need to figure out how to ask her beyond her usual "I forget" excuse.
Creating more structure and predictability was the big message. For my SO, his big take home was a sign one parent was using on the iPad. We had been talking about "now and later" explanations for transitions between tasks and they had to deal with meltdowns if the iPad was hidden away. Putting it into a clear file with a stop sign and the words "not available for now" meant the kid had rules about usage but still had the visual cue the iPad was still safe.
The 'experts' can get it wrong and there are any number of books and online sources saying that ability to make eye contact and evidence of imagination do not preclude autism. I would stick with your instincts and fight to still get the NHS assessment I really don't believe it's possible to be 'a bit autistic'. I agree that the wait is unbearable though, for me as an adult and you as parents.
Yes, I feel a bit arrogant to say I think he's got it wrong, especially as we paid money for his consultation, and yet what he's saying is that he behaves like a boy with autism (sensory issues, communication & social issues, meltdowns etc), but because he demonstrated a willingness to make eye contact, and used his imagination, it doesn't matter how many traits he's got, he can't be on the autism spectrum ... but to me that just puts him at the high, functioning end of the spectrum (but then, I'm no expert!). I have kept us on the NHS waiting list, but it is a notoriously long wait. In the meantime he will transition to secondary school with no support in place, which worries me greatly. Thanks Spotty Tortoise.
My SD16 uses her imagination to escape from reality and has learned pretty passable eye contact.
Screening tools commonly used for kids include ADOS but there are others. Adults have AAA.
I would speak to the teacher in charge of supporting kids with specific learning needs even though he's only traited. You could also get sneaky and ask if they can get a SPELD assessment for Dyslexia in the interim, which could give him just enough support until he's properly assessed :-)
Another thing worth trying is to contact the NHS unit who does the assessment and say you can do a cancellation appointment...other parents may do as you did and go private canceling their NHS screening...but it requires you to be willing to drop things and attend with 24 hours notice.
Good ideas. Thank you.
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.
Thanks AngelDust for taking the time to reply with so much info. Certainly food for thought. I hadn't realised I could still contact the SENco without a formal diagnosis, so that is very helpful (& gives me a bit of hope!).