Could I be over analysing possible ASD?

[Justpeachy88]

Hi all,

I have an 11 year old son and known that he was different since being young. Primary school put a referral in for me for an ADHD/ autism referral after me asking them to and pointing out the issues we have a lot home. He had a lot of school refusal last year and he struggles to concentrate, they weren’t entirely convinced about putting the referral in but did as he masks in school.

Since then, we’ve had lots of health issues, he’s had chronic constipation since being a toddler and was diagnosed with ARFID this year. It’s only the last few months that some of the paediatricians we’ve seen have asked me whether I’ve considered wether he may have autism as they’ve obviously recognised certain things about him and it sounds awful but this made me feel relieved that it wasn’t just me imagining these things as even family members are not convinced, they think he’s doing alot of things because he’s misbehaving, such as tantrums etc.

He’s just started high school and I feel
lile things are escalating there, he’s always in trouble for not doing his work and fidgeting, not paying attention, being late to class etc. We’ve just had an EHA approved but got the confidence from somewhere after reading lots online to apply for an ECHP. So the council are currently looking into it and I’ve just had a meeting with school, they have limited information and have told me that it will more than likely be refused. Fair enough, I know they’re really hard to get. But she also told me she’d be surprised if he got a diagnosis of ASD/ADHD too as there’s nothing sufficient to show he has that. I was a bit taken aback and feel really silly and deflated. Has anyone ever got to the point of the tests and actually found out that in fact their child doesn’t have ASD? She hinted at behavioural problems as my partner does. Could it be that instead?

Sorry if this is hard to understand, starting to wonder if I’m looking for problems that aren’t there.

Who was it at school that said they didn't think he had Autism? From the history you have given, it sounds like an assessment would be worth pursuing. Health professionals would want to consider his medical history alongside everything else.

Thanks for the reply, yes it was school who said this today as I went to discuss the ECHP referral I’d put in for him. We’ve been on the waiting list for nearly 2 years now, got about another 3 year wait but I’m trying to get him as much help as I can in the meantime but she said he’s able to choose his behaviour when it suits as he’s not late to every class, just most and he’s not distracted in all classes as he’s fully engaged in PE.

Schools, in my opinion, are generally not the best at spotting neurodivergent children who are not disruptive and not failing. I would put no weight whatsoever on school saying they don’t see signs - of course they don’t, they’d have to do something if they did. I think an assessment for ASD/ADHD would be well worth pursuing and you might be able to speed it up by using Right to Choose (where the NHS outsource it to a private provider). And I very much doubt his behaviour is a choice or that it’s related to poor parenting.

For what it’s worth, he sounds very like my DC1, who was diagnosed age 9 after I spent years being fobbed off by school. The assessments and tests showed he had ASD - there was nothing borderline about it. He did not, however, qualify for an ADHD diagnosis as they do need evidence of the behaviours in more than one setting for ADHD - so we are keeping an eye on things. But the paediatrician thinks he has that too. They will not diagnose unless he meets the threshold so don’t worry about that.

Keep going, you’re doing the right things.

Can you do right to choose or pay for a private assessment? Constipation and arfid are both more common with autism. Lots of what you are saying definitely indicates that he might be. For what it's worth, I had to fight to convince the school that there were issues with ds2, as he was so quiet there. He essentially went I to play dead mode, as the environment was so overwhelming, he shut down. Took a year to convince them, but the support has been good since then.

Thanks so much for the replies, they have made me feel better about the situation! And didn’t realise ADHD was much harder to diagnose, it’s autism that I’m certain he has. I’ve never heard of right to choose so will look into that more. As people keep pointing out to me, diagnosis is just that, nothing will change in terms of support given as far as aware.

Now fully expecting the ECHP to be rejected but at the very least it’s been flagged to school now and there’s nothing more I can do. My son is disruptive and getting himself into trouble, not completing his school work but all I can do is my best to make sure he’s doing what he needs to at home, his homework etc even though that’s a task in itself!

Can I ask what support your children get in school? As I believe my son will just have to carry on as he is. I’m not entirely sure what things I should be asking for to help him! Nothing has been suggested at school. Thank you

If rejected you can appeal. A lot are overturned on appeal. The actual legal threshold is quite low and LAs will often try and deflect parents away from applying and appealing. The whole system is in crisis

OP, note down every 'difference' you've noticed since he was a baby. Any sensory issues, any communication issues, friendship issues, any odd or unusual behaviour, any obsessions with particular topics/programmes/songs, any unusual speech ie repetitions, any black and white thinking, taking things literally, food issues, melt downs - just everything you can think of because you will forget some things otherwise by the time the assessment comes round. Read up on ASD as well so you're aware of what is typical. Keep adding to the list as you go.

Ds's report from school made him sound like the perfect child - he was clever and no trouble - but he was diagnosed in about 30 minutes by an NHS paediatric specialist who knew exactly what to ask. We were lucky though and didn't have to go through CAHMs who I haven't heard such good things about. So I would listen to the paediatricians that have raised it NOT school. Keep pointing out to anyone that thinks it's just bad behaviour that it's been suggested by paediatricians he's seen - they'll probably back down pretty quick.

The biggest thing that helped ds was being sat at the front of the class. He's not able to filter out distractions (typical of ASD) so would miss a lot of the input and then have to try and work out himself what he was supposed to do. Loop ear plugs might help him while he is trying to concentrate on work to block out noise. School approved fidget toys might help - a bit of blue tac in his pocket might be enough BUT he has to make sure it's kept out of sight. When it comes to big exams he may be able to do them in a small room, may be able to type if that works better for him, may be able to wear loops if they help, may be able to go to his room a couple of minutes before other kids, may be able to have a rest break inside or outside the exam room - but this would almost always need to be agreed far in advance of the actual exams.

Being late for class is probably a red herring - he's probably late because he doesn't want to go apart from PE, and that is just bad behaviour which is making the school then just put everything else down to bad behaviour. Some bad behaviour doesn't rule out ASD though!

What @jessie1259 says with bells on. Make a note of everything that could be deemed not NT. It's harder than it seems, late in the day I realised that what had always been normal for us was very different to NT children. I should have spoken to family and friends a lot more to get their experiences of DS alone (and not with us or a sibling) and not just rely on DH and me. I wish I had done a lot more homework and collected a lot of evidence before DS was assessed as the process was would have been so much easier.

As for Jessie my DS was described as a model student at school when it came to behaviour. In reality he can mask like a pro. He was having huge melt downs as soon as he walked out of the school gate, after school clubs became like running a gauntlet and we never knew what he would be like at them. The underlying behaviour quirks that were normal to us were completely released after our local house move which is when we picked that there could be more to this than a very stubborn child outside school.

The clinical psych said that, even though he could see ASD traits at the assessment he felt our questionnaires and evidence was not conclusive enough for a diagnosis. The school report had nothing of note either.

What unleashed everything was a report from an Ed Psych as we also had him assessed for dyslexia. She was very clear that she could not diagnose ASD but she noted a lot of traits during the assessment which she included in a separate note. She also spoke to his teacher and asked pertinent questions and noticed that, the child the teacher thought was quiet and well behaved and shy was actually very anxious about his learning and kept his head down because he couldn't understand and he found the class environment too sensory and disruptive. In a class of a number of high needs children, he was easily passed over as okay.

The diagnosis of 'some ASD traits but inconclusive' was turned into ASD after this additional evidence.

Thanks so much for the replies, this has made me feel so much better and I can definitely relate. And seeing the things that your children use to help them has given me ideas with this all being new to me.

Will definitely start making my own notes too as it’s helpful to look back on if needed and when asked for reasoning, it’s hard when you’re put on the spot to get everything across that you want to say.

Trying to get through to send support service today and have a chat with them too to see if they can help x

I was just popping on to say a child with constipation, afrid and school refusal is a good candidate for further assessment. All of those things are much more common in asd.

With regard to the chosing behaviour eg not late to all classes just some, can concentrate in PE. She sounds a bit daft. So symptoms of asd can actually fluctuate for some. It's not consistent. Anxiety can be a driver. So if a lesson made them anxious, they might then struggle to get to the next one on time as they have to regulate, or their processing slows down. It's also very common in asd to have special interests that they can focus on, but zero motivation to do other things. My son goes to a special school, but he can totally focus on animal care, but not at all on citizenship. Also the obvious thing about PE is it could be meeting sensory needs which then allows him to focus

Now I am not saying he does have asd. I'm just saying her reasoning around why he didn't have it was a bit lacking understanding of how asd presents.

Well I just went private (after saving for 4 years as knew it was possible due to family history). DD doesn't present any behaviours the school see as autistic , she flies entirely under the radar, no challenging behaviour, exceptionally high achieving, never ever puts a foot wrong etc. her autistic struggles are hers alone. The questionnaires sent to school was completed by her English teacher who barely knew her.

She was still diagnosed as autistic with the information I and she was able to provide and the ADOS. Once she had a diagnosis, then her school started recognising how it presented in her and have since been excellent.

DS's teacher didn't recognise that he was autistic despite having been the SENCO at the point that his diagnosis was made and accompanied with NHS letterheads 🤦‍♀️

He tends to mask very well at school. The big giveaway was the explosion the moment he saw me or his brother at the end of the school day. After the 4 hour meltdown, I mind mapped all the little quirks, niggles, talents and delays that were present since he was a baby and a pattern emerged.

He's "normal" by paternal family standards... the younger generation are getting diagnoses, and there's several older family members who are absolute clichés of autistic traits. Families often aren't good at recognising differences, because they are not differences to them.

I was stunned when the consultant was so decisive in diagnosing DS. She knew exactly what she was looking for and saw it where so many people didn't.

As to support in school, DS is lucky to go to a supportive school attractive to high functioning autistic young people. He doesn't need much active support, but the staff are aware of and leave him to his non-disruptive atypical body language. He knows that he can take time outs if required. When we had a sibling incident the school were good at understanding it from an autistic perspective (DS was struggling to adjust to his younger sibling invading his space in school) and it was dealt with with pastoral support, rather than a punitive approach which would have just aggravated his sense of injustice.

Just being diagnosed and understood makes a difference.

DS2 had classmates that were diagnosed in y6 and again, understanding the behaviour has made a big difference to them.