Are children who mask harder to diagnose?

[Anono2022]

Hi

As above what are your thoughts?

My DS is a masker and though it feels we are on a positive path to finally getting the support he needs I do worry how his ability to mask in school. As soon as he leaves he is explosive, full of energy and extremely hard work.

What's everyone's thoughts?

Good assessors will see masking for what it is, so no I don’t think a good masker is harder to diagnose if there is a good, comprehensive, NICE compliant assessment.

But aren't school a big part of the process

Schools are often asked for their opinion, but a school claiming not to see any difficulties doesn’t have to prevent diagnosis if the assessors and assessment are good.

To be honest I don't know why I worry. Well I do, because I've been put through hell on the journey. Now he finally has a good team around him and all assessments have supported my own observations and much more, I've heard all it takes is for one part of the process to say the are fine and it goes no further. He is so desperate to fit in. I watched him with his friends at the weekend. He was copying them but going too far out of his comfort zone so he was have the biggest meltdowns in public which then made him worse as others could see him.

He is 8 and is getting so resistant and difficult. I was told by 8 he would grow out of it. I knew he wouldn't. He is worse than ever now and getting worse. I worry if things aren't done now his teens will be hell

Good assessors will be aware of the potential for masking at school. They will also be aware some schools don’t always see difficulties even when they are present. A child can still be diagnosed if school don’t agree.

I do understand this and thank you. He has an OT heavily involved due to really bad sensory and she has told me many times schools aren't always properly educated on SEN but she saw more than enough. It actually made me cry when she observed the same as me and discussed the reasons he is doing it. Made me realise he struggles more than I thought

Ds2's school had never noticed anything asmiss (tbf it was a secondary and covid struck after he'd been there 2 terms so not much chance to notice him). More to the point dh and had never spotted it either - we just saw anxiety. Made no difference, his diagnosis was straightforward.

Ime the problem lies with the threshold/ criteria for agreeing to assessment - I.e. child needs to be showing signs in two separate settings, including school. Even though 6yo dd has been showing many of the same behaviours with her cm who she has known since she was a baby, they will not accept her report. Meanwhile, school insist "no SEN" because she's "where she should be academically". If the school has a really good senco, then happy days. If not, the system becomes impenetrable as the default position is "parental failure" and endless courses. Then, only when the child really begins to fail (for example absenteeism from school) or have an obvious mental shutdown, does it tend to get recognised.

child needs to be showing signs in two separate settings, including school.

They really don’t. It is perfectly possible to get a child assessed for ASD without them showing signs in 2 separate setting. However, mostly there are signs, the school just aren’t seeing them or choosing not to see them.

Part of the ADOS autism assessment is a session assessing the child in person so that's one setting, plus the parents reports on home life is a second. Supporting evidence from school is an added bonus but it really isnt necessary.

Thanks all. I appreciate your input.

I'm going to speak to the SENCO. She is great to be fair but other staff not so. Its becoming really frustrating as the way my son is in the playground before and after school he is doing things they arent being flagged by school but have been seen by grandparents doing school runs and other parents dropping/collecting their kids. He is pacing, humming, licking hands, chewing, hitting himself, spinning in circles etc.

Ask to drop off/collect from a quieter entrance &/or 5/10 mins early or late.

Is poor sleep and incontinence considered behavioural in ASD/ADHD?

Questions about sleep and potty training were asked when ds was diagnosed (they ask about a lot of early developmental stuff).

I'm really annoyed by my son's Paediatrician report. It needs to be corrected as there are so many mistakes but it says a few times about it being behavioural. He never once in clinc said anything like that to me. In fact he told me the MAA is exactly where my son needs to be and these things are part of ASD. It was him who told me diagnosis is what is needed here. But the report states behavioural a few times

For context the behavioural issues are his poor sleep and incontinence. In clinic it was never once described as behavioural, in fact Paediatrician was really supportive giving my reasons why these things are common in ASD/ADHD individuals.

Have I take the behavioural out of context?

If you want to clarify the paed’s letter contact his secretary and ask. The use of the word behavioural doesn’t necessarily mean the cause is not ASD/ADHD, but no one can tell you what the paed intended to convey especially without reading the context of the letter.

Do I literally just ask please can the Paediatrician explain his use of the word behavioural as this wasn't mentioned during the appointment?

If that’s what you want to know then yes ask that, I would say something like please can Dr X clarify the sentence beginning “…” in his most recent letter. Thank you.

Do you feel that by using the word behavioural that it implies these things are deliberate rather than symptoms of his condition?

You absolutely can ask them
questions about the report and to make changes. My ds’ diagnosis letter had some inaccuracies, spelling mistakes and at least one sentence that made no sense. It looked like a bad copy & paste job. I asked for it to be amended.

Yes that is how I feel and its upset me to be honest as no one on the team supporting my child has suggested it.

The report wasn't terrible. However there are factual mistakes, spelling errors but mostly unbelievably lacks context with I feel leave it open to misinterpretation. I also have one statement that makes absolutely no sense at all and has no relevance in the sentence it was used in.

I wont say too much but ive been put through hell on this journey and been made to look like a liar by a previous school that did nothing to help. Misinformation is a massive trigger for me as my son as been let down horrendously due to failings of others. The sad thing is we waited so long for his appointments to begin and straight away all my concerns were observed and supported and he was put on the MAA very soon after his appointments began.

Anyway I requested the report to be rectified. It was rejected on the basis that he does not have the time. This includes the factual errors and the spelling mistakes. I asked for clarity on what was meant by using the term behavioural several times and I was told he was unable to comment on if he feels this is behavioural as he is a general Paediatrician and not the community paediatrician so this does not fall under his remit. It's bloody annoying as the referral was to the community paed! But how can he say that but use the word behavioural in his report several times?

Anyway I'm really disappointed about him not being willing to rectify my son's report. He said he did not have the time to provide the detail and his memory does not recall the details I've provided. Which is funny as I don't recall using the phrases stated in my son's letter either and i know full well how i discuss him in appointments. I am very thorough. I am so determined to help my son I know exactly how I speak about him and about how he presents. I know the detail I go in to. I would never be so vague and use the phrases used in the letter. I'm really annoyed.

Apparently I needn't worry though as a clinician will always take the word of the parent and child so don't take his report as set in stone. Personally I think that's bull!

It's just shit as my son has been majorly let down due to misinformation and I'm so angry it's happened again.

If you want you could contact PALS to help mediate. The factual mistakes at least should be corrected. I wouldn’t mention the spelling errors unless they change the meaning on the sentence, in the grand scheme of things they are minor and detract from the other issues that are more important.

In the meantime I would write to the GP and anyone else copied in to the letter correcting any factual mistakes. I would focus on factual mistakes rather than any subjective opinions and conclusions or spelling mistakes.