Newbie: Child with several Autistic Traits but not Autism???

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.

  • Thanks Slight smile I've tried to make it my aim being on this forum to be an inside perspective as much as I can.

    It was very unsettling when I was a child not really having the introspective skills to work out why I was struggling in certain situations (let alone the ability to articulate my feelings accurately- I still find it harder describing emotions accurately than any other concept or item) and things like the meltdowns were happening. Didn't help that my family hadn't even heard of autism/aspergers until I was flagged up by CAMHS in my early teens, so we were working double-blind.

    So my goal now I'm able to do that for myself is to spread it around and so try to make things run a bit smoother for other autistic people. I'm really glad it's helping you! x

  • ThinkingThinking That both makes me smile and feel a bit less anxious about hearing that...!! I can sort of see what he means,but the more I read, can see why the surface isn't everything and could give the psych examples where my son wasn't masking. Thank you so much for your contributions Emma, was reading the other one about meltdowns etc last night and it's so helpful as a parent to get a perspective on what it must feel like inside. 

  • Ha! "Puzzling" was the word my first assessor used for me too. I genuinely stumped the man. 

  • Quirky's a good word haha! Grin You're welcome, hope things go well at the autism clinic- you would hope they'd be up to date in their knowledge and generally experienced there so fingers crossed they'll see past any potential masking he's doing re. his autistic traits.

  • Thanks. My son has been described as quirky by more than 1 doctor as quirky or have a lot of quirky traits and behaviors. I am just like, how many more quirks does he need to qualify for a diagnosis?

  • Thank you so much. This gives me hope that we may get a diagnosis. He does use an imagination and he does communicate but it is different. The word I have heard a lot is quirky. 

  • Definitely continue to pursue assessment, my son now 11, similar story with autistic traits identified but quite sociable (on surface) and other inconsistent areas. However despite that (and even his consultant psychiatrist describing him as puzzling!) he will have a diagnosis of ASD now.

  • Probably a bit late to respond as such to the main thread, which is almost a year old, but the fact that a child is making eye contact and communicating, or even using imagination in play, should not prevent the diagnosis of autism (esp. of the aspergers-y persuasion). 


    An intelligent autistic child is very capable of observing what other people do and copying it in order to 'fit in'- using their intellect to compensate for what they lack in social skills, if you like (especially if he has been told a lot at school to "look me in the eye when I'm talking to you", for example). It may not be what comes naturally to him and it may, even on a subconscious level, make him feel very uncomfortable, but this is all internal and so the assessor will have no idea. It's the most common response to a difference in social ability in girls (which is why, for a very long time, we were so hard to diagnose), but boys can and do do it as well.

    A much better indicator is their behaviour as very young children (before they learned to compensate), around other children (especially groups he doesn't know) and in the long term. One adult is easy to fake it with as an older autistic child, doctor or no. 


    Also, re. imagination, it is not a deficit but a difference in the way imagination works. Many autistic people have a massive amount of imagination at their disposal! I always did. I would easily write stories and poetry, but my favourite was imagining and compiling information on made-up worlds (complete with scale maps, descriptions of the societies therein, the history, languages and the wildlife found there). My physical play was a bit of a weird hybrid of the "sorting things into categories" followed by the imaginative kind.

    It is worth getting a second opinion as you are doing. My diagnosis took 3 years and a change in assessor (to someone younger and more up-to-date re. females with autism, in my case). I appreciate that it can be a long and difficult process and hope it is going as well as it can for you. 

  • I have received the same from the developmental pediatrician. I was told my 8 year old son has autistic traits but is able to give eye contact and communicate. However, she did set up an appointment for him to be seen the on the 20th of July in the Autism Clinic at the hospital for a full evaluation. Hopefully we'll get some kind of diagnosis. It has been years of back and forth.  

  • Schizoid personality states include autistic behaviors and thinking.

  • Hi Commander Lark,

    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.

  • Thanks, he got his NHS appointment over the xmas hols, and he has now been given a diagnosis of Autism Spectrum Disorder (Asperger's in the old way of labelling). We're now getting support and help with transition to secondary. Thanks Spotty Toroise.

  • 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.

  • Hello, my advice is to persevere. We have since had our NHS appointment, and he has now being diagnosed with Autism Spectrum Disorder (Asperger's in the old way of labelling). We now are getting access to a bit of support, and his primary school are working hard to ensure he gets the help he needs with transition to secondary school. Best of luck with it all - it's a long process x

    1. Hi, I am facing the same situation like you with my 10yrs old son. It has not been easy since he was a baby till date n still no actual diagnosis. he first got speech disorder, Intellectual disability, ADHD, social communiction disorder n now he's been diagnosed with having autistic traits. by the way I reside in Germany. pls kindly update me on how far u have gone.this will really  help me.
  • 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!).

  • 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.  

  • 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.

  • 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.