Autism Diagnosis

[towriteyoumustlive]

My son is in Y3 and as much as he is a lovely boy, he is exhausting to parent.

I’m 99.9% sure he is autistic, but I feel like I’m getting no where when it comes to getting a diagnosis.

He is bright (100% in all his Y2 SATS), but day to day life with him is a battle. You ask him to do something and he wants to know exactly why he is being asked to do it before he will cooperate.

Even a simple meal time involves me having to explain why he has to sit down at the table, then a discussion of every ingredient in it, wanting things very specifically on his plate. And then if something is wrong, he loses his ability to speak/explain and runs off.

Every instruction is met with anxiety and 100s of questions. Asking him to put his shoes on involves explaining where we are going, how long we will be, how we are getting there etc…

He cannot read emotion very well. He tends just to not show any emotion most the time, and then when he does it is extreme excitement or extreme anger.

He does a sports club, but only because I do it with him. Every instruction needs re-explaining and he won’t do the task until he is sure about it. Anything new is met with a refusal. Same at school. He misses out on so much because he deems it to be new. He either freezes, cries or runs off and hides.

He is also learning an instrument but again, only because I do it with him.

He was flagged up at his age 2 check due to limited speech. They then signed him off age 6 because he is “doing well” e.g. he goes to clubs and is succeeding at school. The doctor basically told me that because I parent and support him thus enabling him to join in with “normal” things I therefore am masking any autism signs because he is ticking boxes.

The school then referred him to CAHMS (they agree he is autistic) but I’ve just got a letter back saying they’ve done a neurodevelopmental condition screening and based on the information provided an assessment is not necessary. Instead they are offering mental health support for anxiety, which I’m sure will help, but won’t get the ASD diagnosis he needs.

How can they tell that from some tick boxes without even meeting him!?!?

Was I supposed to over-exaggerate all his symptoms and needs on the forms?!?

I feel like banging my head against a wall. I am a secondary teacher and work with autistic children, and am quite sure he is autistic. Although he is managing now, I am really worried about how he is going to manage secondary school. Without a diagnosis, and thus teachers not realising that he needs some additional support, I fear that he will end up refusing school, which would be a shame given he is so bright.

So AIBU to think that it shouldn’t be this hard to get a diagnosis?

No, it shouldn’t be this hard. Unfortunately, it seems that the bar for NHS assessment is being made higher and higher, to prevent waiting lists from getting any longer than they already are. It’s unethical.

Whose done the screening? School or cahms?

And yes - similar battle with a girl who masks...as they do...

If you can find an Ed Psych who works with your LA and pay for a private assessment. That was the way I got the ball rolling, from first voicing suspicions to confirmed diagnosis was 11 months.

YANBU.

Have you heard of 'Right to Choose'? If you can get a GP to agree to refer you, you can choose your own assessment provider - there are a few that offer ASD assessments for children. See https://adhduk.co.uk/right-to-choose/ (link is ADHD website but all the info is relevant for autism too).

However, my local ICB will only fund assessments under RTC if you haven't already been referred and rejected:
"It must be for an initial referral for the assessment i.e. if the child has been referred for the Neurodevelopmental Pathway by school and the child either did not meet threshold for assessment, or they met threshold and are on a waiting list for a neurodevelopmental assessment by CCS or CPFT, or has had a previous assessment that did not provide a diagnosis then this would not qualify as an initial referral."
So you should check with your ICB whether they will fund it and what the criteria are.

If that's not possible then unfortunately I think going private will be your only option, if you can afford it.

I managed to find a local child psychologist who does autism screening assessments - not a full assessment but they write a short report explaining whether and why they think a full assessment is warranted. It can then be used as evidence when pursuing referral/assessment under the NHS. Could you look for something like that?

You’ve pretty much described my eldest to a tee. Language delayed at 2 but then became hyper linguistic - is too articulate for his age, has little fluidity in social conversation, talks at you not back and forth, huge anxiety (my son won’t entertain after school clubs or activities, won’t even go on school trips). Also highly academic at the moment, especially in reading and maths.

His school (like your sons) could recognise ASD and adhd traits but I had two paediatric consultants deny him for ‘being too close to the neurotypical end of the scale’. Since Asperger’s has been dropped as a diagnosis it seems whilst they’re younger that being verbal and academic seriously goes against them. Then they inevitably burn out by secondary, behaviour and MH issues come to the forefront and only then is it taken seriously. I could see what was going to happen (because it happened to me and his dad), so with the school’s support I appealed to the paediatrician, explaining exactly how my son was struggling in every way (even academically, just because he could get results didn’t mean he didn’t have huge meltdowns just writing his name at times). I said ‘if you do not start taking this seriously you are letting my son down, he will suffer from lack of recognised support’.

He went back to the paediatrician a few weeks later. Adhd diagnosis at the same appointment, ASD diagnosis 8 months later. The panel who reviewed his information/assessments said it was a very clear case.

It’s so hard, but you have to keep pushing, fighting and arguing. The only other way is private assessment if you have 2k+ to spare.

Best of luck, my next fight is for an EHCP for my son which has been promised to get started in September now. They won’t see the back of me until it’s in draft so he can get full support at school.

I had a meeting with the school and they wanted to refer him to CAHMS. They (the primary school) think he is autistic.

CAHMS then sent some forms and both myself and the school had to fill them in and send them off.

Exactly this. Didn't speak as a toddler but now hyper linguistic is an excellent way of describing him. We go for a walk and the weird and wonderful thoughts in his brain come flooding out. He sees things and thinks things so differently.

He doesn't like people seeing him upset or anxious so masks it in public. He is already super anxious about the new school year and thus new teacher.

His behaviour has a huge impact on us as a family, especially his two older siblings.

I don't think he will need an EHCP, but to have an autism diagnosis so that secondary school teachers will know that he needs specific support so that he can access education will make the difference between a bright boy doing well or refusing school.

EVERY instruction needs explaining but he won't ask for help. He will sit there and withdraw himself, or cry, or run off and hide.

I guess I will see how the Mental Health anxiety support meeting goes and just keep pushing. Hopefully meeting us in person will make them understand that he IS autistic and DOES need some support.

This is really helpful. Thank you!

Support should be needs based and not dependent on a diagnosis. That said, I think schools pay more attention to a diagnosis. I went through PALS after being fobbed off by the NHS. This secured the autism assessment that DS scored very high on. The thing is, the assessment didn't really tell me anything I didn't already know so I can almost see why it feels wasteful in terms of nhs resource. It does open doors to support though. I also feel more confident, perhaps more justified, advocating for my son now he has a diagnosis. It also opens up the possibility of schools that require a diagnosis.

It shouldn’t be but it is - funding/staff ect means that thresholds are high and the money to do it is non existent.

if you can pay privately. It’s what we ended up having to do.

You're welcome.
My son is in the year below yours (about to start Y2) and masks at school so they have no concerns about him 🙄 I share your worries though that things will just get harder and harder for him at school without the right support. Like you we struggle at home (DS is my oldest and I have a younger child too, it's really not easy).
We are going the RTC route because I wasn't get anywhere with school, there is a long list of requirements before local community paediatrics (who does assessments for primary school age) would even accept a referral, and SENCO has been saying DS won't meet the threshold. Luckily though the GP agreed to refer.

My son has amazing and quirky thoughts. Sometimes he starts conversations in his head then carries them in out loud, he doesn’t understand why I’m confused about being brought half way into his processing 🤣. He’s started stimming a lot now, not something he used to to. However my son cannot mask at all, his dad is pretty poor at it as well in all honesty and stress makes it a lot worse.

Don’t dismiss the idea of an EHCP. My younger son (who didn’t have an issue getting into the ASD process as he is severely delayed) was pretty much whizzed one through and I believed it was only for children with his level of needs. I thought just having ASD traits/eventual dx would be enough for my older son to get support but it really doesn’t. Mainstream education will often only put support in place when an EHCP is granted, often there isn’t the school funding available otherwise. My eldest has been shoved from class to class, missed out on school trips and even told to stay home due to there being no legally binding support package in place.

I'm a secondary school teacher and if a child has an autism diagnosis then I have information available before I teach a class which is very helpful to me, and can make a huge difference to a child.

e.g. I know which pupils not to ask questions to in front of other students. I know which ones need checking on during independent work. I know which pupils need the rules adapting (e.g. uniform adaptations etc...).

It can make the difference between a bright child succeeding or a bright child shutting down.

Without a diagnosis you're completely reliant on the form tutor then passing messages onto teachers etc... then the teachers maybe forgetting as they're super busy.

As a parent I support my child. I know he loves the sport we do, which is why I do it with him, as although lots of it fills him with anxiety, he always finishes the class having enjoyed it. I don't feel it is fair to have to stop supporting my son just so he ticks the right boxes to get a diagnosis. The system is ridiculous.