Concerned our high functioning child will not be diagnosed as autistic because his traits aren’t severe.

Perhaps don't get him diagnosed? I for one would've much preferred it if I'd have avoided it.

NAS78326 said:

We are wondering if anyone else has experienced doctors not believing your child is autistic because they are high functioning

Hi there. I am brand new to the forum and have found this space because i am really struggling with the same thing. I have a 13 year old daughter who has severe anxiety and now depression as well, because she has become so isolated being off school and not being able to socially connect, and yet she is very high functioning, very intelligent and willing academically - actually loves the structure of school and is doing most of her education through working with the teachers via email - off her own back. We had our assessment a couple of months ago and I was very dismissively told that she can feel empathy, she doesn't spin around and bang her head against things, or line things up, can make eye contact and hold a back and forth exchange and therefore isn't ASD. All these are masking behaviours which cost her hugely in effort and anxiety, and she is 13 and high functioning so why would she spin around and bang her head on things. And in what day and age have we gone back to thinking that ASD people can't feel empathy? All the research shows that they often feel too much and are overwhelmed but can't cognitively process it. The doctor told me that she was underweight and needed to exercise more, as last messages as we were going out the door. I felt effectively told off as if I was making it up and being a bad parent. I was so upset, and felt invalidated, unsupported..... 

I am at my wits end with it. She is self harming, and the counsellor supporting us says that if we hadn't already gone for the ASD assessment she would ask us to because she says there are markers for ASD. The school are giving me the brush off.... 'oh well, you don't need the label'..... kind of approach like it doesn't matter. 

I can't access the specialist support for her without the label and there is lack of understanding of what is driving her anxiety if they don't recognise the ASD and the masking. 

Sorry, didn't mean to hijack your thread with my story, i was just so relieved to find other people struggling too. 

Robin xx

school would normally help with a diagnosis. We constantly kept asking for help and took until he was 7yr to be noticed something wasn’t right in school spite mum and dads reports. Now his school think he has ADHD and He wasn’t really assessed to gain his diagnosis. Well clearly he was, but school must of been assessing him. Mum and dad have to goto adhd classes, he’s been moved away from the other children. Basically our voice didn’t matter, schools did. Doctor kept telling us school. 

im nhs medically diagnosed autistic. Recently too. But then again that then contradicts everything I say about schools.. I was branded naughty in school not learning disabilities. 
It’s a tough world for me, Ste

I'm a young adult who is still looking to be diagnosed and I was receiving mental health 'support' from CAMHS for 4 years before I turned 18. They completely missed it, my therapist even dismissed my severe issues with social interaction as being 'quirky'. 

Schools also knew that I struggled, but they just assumed that I was a bit shy and awkward. I only realised because I happened to speak to an autism researcher in my uni, and I ended up doing the autism quotient and getting a really high score, which led me down the rabbit hole. 

Unfortunately, the NHS is not very effective when it comes to diagnosing and providing support for more subtle issues that aren't immediately visible. 

Thankfully, my GP agreed to refer me for an assessment so we'll see how that goes.

In general I would suggest doing your own research first (being a psych student helped me with that) and making sure that you're able to identify your child's specific traits and behaviours that are cause for concern, because a lot of the time, doctors can't put the pieces together, you have to do it for them

My goodness I could have written this 3 years ago. We received diagnosis yesterday got my 10 year old and the relief is immense. We, like you saw all of the signs and behaviours but he masks so well that many scoff at the mere thought or suggestion that he may have ASD. My favourite (not) line is “aren’t we all a bit on the spectrum?”- literally boils my blood. Anyway my point is, you are the ones that are living through it and the professionals are just that-they are able to pick up on the smallest of cues and gave such a systematic and skilled approach. Never in a million years did I think they would recognise any traits in him but here we are. 
We (my husband and I) had a 1hr appt with the psychiatrist, we completed numerous questionnaires, as did school and then my son had 1hr appointment with a specialist occupational therapist. We were assessed by clinical partners (nhs arm). It took us a long time to get here and had to go through the system including cbt for anxiety and anger management which was not right for him but gave us referral to CAMHS. 
good luck with your journey, believe in what you see and trust that the assessments can be effective. The nice guidelines outline what you should expect from assessment and the professionals involved. 

I'm sorry you have had to fight so much just to be taken seriously. It seems to be a common experience for a lot of parents on here unfortunately.

It really makes me appreciate our SENCO who is very pro-active and has been a real support so far. I am bracing myself for the long, long wait for assessment appointments though, as we only had our referral submitted about a week ago

I have a self-diagnosed condition involving ACE trauma, ASD and high sensitivity — which I freely refer to as a perfect storm of train wrecks. It’s one with which I greatly struggle(d) while unaware, until I was a half-century old, that its component dysfunctions had official names.

Thus, it would be helpful (at least for me) to have books written about such or similar conditions involving a tumultuous combination of high sensitivity, adverse childhood experience trauma and/or autism spectrum disorder (the latter which, I’ve found, has some symptoms similar to high sensitivity).

I read a book about highly sensitive men [The Highly Sensitive Man] that totally fails to even mention the real potential for additional challenges created by high sensitivity combining with adverse childhood experience trauma and/or an autism spectrum disorder. Similarly, The Autistic Brain completely excludes any mention of ASD coexisting with high sensitivity and/or ACE trauma, let alone the possible complications thus additional suffering created by such coexistence. And the book Childhood Disrupted, however informative, doesn’t even hint at the potential for having to suffer ACE trauma alongside ASD and/or high sensitivity.

I therefore don't know whether my additional, coexisting conditions will render the information and/or assigned exercises from each of the three books useless, or close to it, in my efforts to live much less miserably. While many/most people in my shoes would work with the books nonetheless, I cannot; I simply need to know if I'm wasting my time and, most importantly, mental efforts.

When my 6 year old daughter was first referred it was rejected until I wrote a lengthy letter to the GP detailing all the traits I and others have witnessed that could indicate autism. Then when she had her first consultation the doctor spent forty minutes asking me the same information I had filled out on the form, then talked to my daughter for five minutes before telling me he doubted she was on the spectrum because she could make eye contact and follow instructions. He did say that she could continue to the next stage of the assessment if it would ease my mind. Then they lost all the paperwork and I had two weeks to do it all again and get it back to them or they'd assume we were no longer interested in having her assessed. I did as they asked but I haven't heard any more. 

I wish I had some advice for you, but all I've been able to do is just keep fighting for her to get assessed.  

Thank you for that advice, it’s really appreciated. It’s  good to know we are on the right track and are already doing all we can.

Hi, and thanks for your reply.

In answer to your questions, there is autism in one side of our family so our sons grandmother has a lot of experience with autism and so saw all the traits, signs and behaviours, so we were really lucky in that respect. 
We have had to and are still really pushing the school to understand and take it seriously. With it being a hidden disability, and with children acting differently in school to how they act at home (as with your daughter being introverted), we feel it has been missed, or they aren’t taking us too seriously. 
We are putting more pressure on the school now to force them to help and send assessments to the doctors etc, and are making ourselves a nuisance, but we’ve found that’s the best way to get through to them and be heard!

Yes, our daughter very much first presented with chronic tummy aches and anxiety, usually around school and bedtime. It is only since we have started talking to her more about it that she has opened up a bit more and her reactions to certain situations has become more obvious to me.

It's so hard because you constantly second guess yourself! Also, as I am training to be an SLT, I have some training around autism, so I worry that I am over-pathologising everything! 

My daughter was older than your child, and she wasn’t observed as such. She is high functioning and was masking, and they put all her issues down to anxiety and the fact her father had split with me. I had given them a long and detailed report of all her problems, divided up in sections. Of course, that strangely went missing, so I had to bring it again, and have them copy it. The report from her school was out of date, so there was nothing to show she had any difficulties. She didn’t get diagnosed. I went private, several years later. No I couldn’t afford it. I used my emergency savings….

I would say, as mentioned already, be prepared. I really think it’s luck of the draw these days. You do always get a second opinion, and there is always the private route. It depends if you absolutely need the factual evidence, or if you can just get used to self diagnosing your child. Any help can be given without a diagnosis, especially in the school environment.

Hi, 

I'm afraid I have no advice as we are at the very start of the referral/assessment process with our almost 8yo daughter, but I just wanted to say I share the same concerns. Our daughter is very academically able, and is also very reserved/introvert so I worry that not enough will be picked up within the confines of the assessment. 

I agree with Catlady31 though, and think the best thing we can do is to go to appointments armed with as much information as possible about our child's behaviours/areas of difficulty (including specific examples if possible). The SENDCO at the school approached us and I get the impression she thinks there is enough there to suspect autism - but I'm not sure if this counts for anything when it comes down to the actual assessment?

Do you mind me asking what prompted assessment for your son? And did the school pick up on signs or did it come from you? 

Hello, I'm a parent of a young adult diagnosed with Aspergers.  We have been through the very same with our son, first when he was 9 and again at 13.  ADOS was carried out and came back showing some areas of concern but not enough. Now a young adult, Adult services carried out an assessment and have diagnosed high functioning autism.  We were told our son was probably flying just under the radar and it was missed.

Trust your parental instincts because you as a parent know your child best and will see how they interact, behave, what they excel at and struggle with 24 hours a day.  Go prepared with notes from their childhood, their developmental history, how they interacted with others when a toddler and young child, any sensory issues, repetative behaviours and emotional issues.  

It has taken us so long and all the time, we knew. Sometimes it might take longer for others to see, even professionals. 

Good luck, I hope you get the support you need.