DCs diagnosed with ASD/ADHD much later

[Obviouslynotinhere]

Hi all,

I have a strong suspicion that DD (6 in Oct) may have some form of ND. We had absolutely no suspicions until she started school. But I can see now there are things that make her different from a typical 5 yo.

I know she won't meet a criteria for dx at this time as she's not really struggling with anything yet but I'd like to find out from other people experiences who might have had the same history (child who hit all milestones on time, good talker from early age, no meltdowns, setting into school really well, mostly very social).

Her 'quirks' are:

• Hand flapping a lot whilst pulling strange grimaces

• talks A LOT ( wherever we go absolutely everyone comments on how chatty she is). Unfortunately a lot of this talk is irrelevant, she talks about her cat A LOT.

• when she is supposed to walk, she never walks in a 'normal way', she sort of jumps ahead with her head down, whilst flapping...all the time. As if she just doesn't know how to walk. This is something quite recent.

• jumps a lot, mainly with excitement.

• she seems a bit more immature than girls her age, as if she hasn't matured since she was 4. This is becoming more obvious at school and a lot of her classmates don't like playing with her.

However she's quite mature emotionally, she'd not make a fuss about little things and I don't think she's ever cried as school, even if she's hurt or someone's been mean.

• doesn't like sudden or very loud noises, hates toile flushers, she is ok with regular noise for instance in a soft play or a busy shopping centre she's absolutely fine.

• chews her hair/clothes/soft toys.

What worries me the most is her regression in her social skills. She had so many friends since she was 3 and she is still seeking friendships, always plays with other children in playgrounds but she's not made any friends at school, some of the girls in her class refuse to even hold hands with her (when they go somewhere with partners) and so plays a lot on her own. School has expressed concern about it.

I know a lot of 5 year olds have quirks and little odd things but my gut is telling there is something we need to keep and eye on as she may start struggling later.

Anyone has any advice?

Sounds a lot like my DS. He met all his milestones, though at the latter end of the time he was supposed to, it was only starting to use two word sentences he was possibly a little late with, but could combine pointing and words so it didn't cause concern at the time. And the school repeatedly reassured us he was doing fine socially, it was us who were concerned when we saw his behaviour with his peers.

But yes, it was when he went back to school after the lockdowns that he just started not being able to cope, and the school agreed to refer for assessment. They did say he wouldn't have been referred earlier as the evidence just wasn't there for it, but at the same time they had been keeping an eye on him, unknown to us.

Have you told the school everything that's causing you concern? You could ask to speak to the senco (alnco if you're in Wales).

Hi, my main advice is to trust your gut and don't let people fob you off. You know your child best.

Find out the route to NHS assessment in your area; in mine the referral has to be from school SENCO and in others it's the GP. If you're in England there's also the option to go via 'Right to Choose' which means if your GP agrees to refer, you can choose any private provider with an NHS contract. The potential advantage to this is a shorter waiting list and easier path to assessment (eg if SENCO not on board or if local NHS rejects referral due to child apparently being fine in school).

If you can afford it, consider getting a private OT assessment. They will assess any sensory needs and make recommendations of things to help. Can be shared with school and used as evidence in future. Find an OT with knowledge / experience of sensory issues and sensory integration.

My son was clearly (to me) ND and it was clear from a young age despite hitting all of his milestones (walking at 10 months, always very chatty with a good vocabulary). I noticed the differences more when he started school and struggled with friendships. School saw nothing. He masked like a pro and exploded at home after school. He wasn’t diagnosed until he was 10 and even then I had to go private.

I know she won't meet a criteria for dx at this time

If I had a pound for every time I heard this!

Absolutely no criticism of you OP, because it’s a commonly held misconception, but unless you’re an actual clinician involved in the assessment of kids then you really don’t know whether your child meets the diagnostic criteria or not. Also, your child doesn’t have to struggle with anything to justify a referral.

The fact is, some kids - girls especially- can present in subtle ways, and HCPs are fully aware of this.

I have been in your shoes. Despite feeling in my bones that my daughter was different in ways I couldn’t quite define (things like “difficult”, “high maintenance”, “spirited”, “oppositional”) I truly had no inkling that she was ND. I just thought it was her personality. She started school and apart from one bit of feedback in Reception that she found free play impossibly difficult and would wander around aimlessly, no one ever raised a concern. I felt she struggled socially and asked about this, all fine they said. I felt her focus and attention span was awful but again, they said she was fine.

Thank goodness her younger brother presented with more obvious autistic traits and got diagnosed before her, because only then did I look into autism in girls and see that it fit her to a tee. I was worried she’d mask too well for the assessment but they saw through it. Now I have the dilemma of do we/do we not get her assessed for ADHD.

Hi @Obviouslynotinhere

You're daughter sounds EXACTLY like mine. Everything that you've described. She recently turned 5.

My 12yr DS sounds very much like @Trinity69 and I have suspected he's been ND since he was 3-4, but much more so in the past 2yrs. Even he's said he thinks he has ADHD and autism 😕

I was diagnosed with ADHD and it's clear both children have it and ASD as well. I likely have ASD as well and just never clued in.

I don't quite know what to do or how to help my children though because my husband insists they're normal and nothing is 'wrong' with them and forbids me to get the diagnosed. I have attempted to get my son on the diagnostic list with his GP 3-4 times now, but he finds out each time and it results in a massive argument and he cancels the appointment.

Please please do your best to support your child and get them a diagnosis so you can better understand how to support them yourself along with the school. ❤️

I didn't really suspect anything about my child until 5-6 although in retrospect some behaviours as a toddler were on the less-typical side of normal.
At that age I didn't feel he would meet diagnostic criteria and his quirks weren't really causing him problems, but by maybe 9ish it was more obvious.

Your post is contradictory as you say she won't get a dx as she isn't struggling. Further in your post you give specific examples of where she is struggling- socially, emotionally, repetitive behaviours and sensory needs. As the social and academic demands increase as children get older, often the needs become more apparent. I can't say if your dc has asd or not but if it were my child I would be seeking assessment. Girls especially mask massively and there could be a lot more going on that you can't yet see. For example you say she's emotionally mature and attribute that to not crying. Not crying is not emotionally mature (we cry at all ages). In fact it's showing emotional maturity and a recognition of our own emotions and how to express them in a way that gets our needs met.

My son is now 12 has had diagnosis from last year and took us 3 years and he met milestones was happy smiley baby clever little boy has friends but I knew there was something, it’s snowballed as he got older, school initially denied anything however covid hit and he loved being at home when he went back it all blew up for him and us and school started taking things a bit more seriously - he ran away etc was really awful.

I think if you’ve got concerns get in the system as early as you can as diagnosis takes time. As is is my son has asd & adhd probable dyslexia and dyspraxia the earlier you get help the better, not saying the help will be great mind you, my son starts high school on wed and I’ve no idea how that will go…

Thank you for sharing your experience, that's very helpful.

Like your DD, my DD finds free play difficult, she prefers structure and activities that are adult led, which I did think it's odd. Her teacher also mentioned that a couple of months ago.

I did speak to a pediatrician about 6 months ago and because she knows her and she is aware of her development, she is the one who said she didn't think she needed a referral (yet), as most kids who get referred really struggle and she doesn't.

However, we did change her school half way through the year and moved her to a private school after Feb half term.

when she went to her state school in Sept she settled in really well, however after a while her behaviour at home became horrid. She was coming home stressed, her confidence started dipping (despite doing really well academically), stopped engaging. Her teacher did mention she was covering her ears sometimes as she found the disruption in the classroom difficult (there was a lot of hitting and spitting and shouting too).

Moving her to a private school was the best thing we could have done for as she settled in so amazingly well, there is very little disruption with 14 girls in the class and is now engaging, participating and she absolutely adores it.

However I was very surprised to find out from her teacher that she prefers playing on her own and lots of girls, although excited at first to meet her, are not really engaging with her. They did mention her being scared of toilet flusher and the fact that she talks a lot about her cat.

We are so confused as until end of last year we weren't aware that ND can present at a later stage in children who had a totally typical development until 5.

Well, I guess that's contradictory....it's what the pediatrician told us back in Feb, that children who get reffred 'really struggle': to settle into school, to learn and so on. She hasn't had these struggles despite her sensory issues.

We do have friends who have DCs with suspected SEN with more obvious traits: one of them is home schooled as she hated school and couldn't settle in, the other one is at school but struggles academically and hates it, so every morning is a struggle for parents to take her in. In addition to very severe sensory issues, suspected PDA too.

We naively thought that because DD hasn't really struggled that way and is usually quite easy going she must be NT. But I can see now it's not so black and white.

• referred

Thank you all for your advice.

I was looking at a private assessment cost and it can be as high as £1900 😐. Is that right? We are in England.

My DS is 6 and is currently in the process of being assessed for ASD. He shares most of the quirks that your daughter displays. He hasn't struggled in any major way since starting school last year, but we have still been told that he meets the criteria for assessment.
If I were you I would get the ball rolling in terms of assessment, as we have found it to be a very long process. We aren't in a position to pay for a private diagnosis so have gone through the NHS. DS was referred in January of last year, and whilst we have had a couple of appointments with a paediatrician we are yet to have an actual assessment.
I'll also say that my DS has never really cried at school either, even when he's been hurt, and this was brought up as one of school's concerns, rather than being a sign of emotional maturity. I would also add, gently, that if your daughter was covering her ears, hitting/shouting/spitting etc. and not forming relationships with peers, then she didn't settle into school really well and from this alone I would be seeking assessment now, rather than waiting until she really starts to struggle.

We are so confused as until end of last year we weren't aware that ND can present at a later stage in children who had a totally typical development until 5.

It’s not that it doesn’t present until later - it’s always been there - it’s just that in society we learn (completely incorrectly) that autistic kids have delayed speech, can’t show affection, can’t make eye contact etc so when an autistic child presents in a non-stereotypical way, it’s not noticed.

My daughter’s speech was always quite precocious for her age. Again, a common female presentation but most people can’t fathom that a seemingly confident, chatty, unusually articulate 4yo girl could be autistic.

I started to realise that what I used to think was confidence and extroversion was actually a child making social errors. One example being launching into an anecdote about having some Crocs at home to a teenage girl measuring her feet in Clarks 😄 Little things like that taught me that she wasn’t aware of subtle social norms, like not telling long meandering stories to strangers you’ve just met!

It was raised at my daughter’s report that she used language typical of an older child. Believe it or not, even that counts as a communication/language difference relevant to autism.

Thank you for your advice. Can I ask you if your son hasn't really struggled in a major way, why did you decide to go for an assessment? Does he need support in school?

DD settled in her private school really well, 2 weeks in her teachers said to me that they almost forgot she just started, she was happy, she's not covering her ears anymore as there is no major disruption in the class, she's engaging in the class now, asking/answering questions and confidently talks to everyone, however prefers adults. Also we noticed a big difference in how she comes home, she is so happy, she's not had any of those hideous outbursts since she started her second school. And can't wait to start Y1. I'm just trying to explain why I said she settled in really well.

Definitely get the ball rolling for an assessment OP. My daughter has just been diagnosed ASD at 14 - if I went back to her primary school and told them they'd be completely shocked, no teacher ever raised a concern with us. She masked like an absolute pro, but the disruption caused by COVID and the transition to secondary school led to uncovering massive mental health problems that we are only now beginning to get a handle on. Lots of damage was done by the lack of recognition of her difficulties earlier on sadly.

Hi op. My dd11 is in the middle of being assessed (we've had one assessment and are on the waiting list for the second one). She met all her milestones and nothing became apparent until after lock down.

On saying all of that when you're going through the assessment it's quite illuminating as to what they ask about in terms of how long she had been doing x or y. I came to realise the signs were there but we'd simply put those things down to personality rather than thinking of them as possible neuro divergence.

I agree with pps, if you think there is possibly something there then start working on getting a referral. We are coming up 3 years for when my dds behaviour started to raise questions and still haven't had the second part of the assessment (and that's with the school being really good and supportive!)

Thank you, that's helpful. I'd say less than half of the second picture applies to DD but I do realise things are not so straightforward.

The talking confidently to strangers I find very irritating, I did suspect a while ago it's not exactly typical, even though some people find it 'adorable'.

Gosh, I didn't realise it takes so long. Thank you for your advice.

Yes that's how much it costs. Hence my advice to find out about NHS route and consider right to choose as another option.

In my first post I advised a private OT assessment which is a few hundred pounds and was worth it for us; it probably will be worth it for your DD too because you have listed loads of sensory issues.

Can I ask you if your son hasn't really struggled in a major way, why did you decide to go for an assessment? Does he need support in school?

I’m not @SuperNerd88 but I’ll answer anyway.

Again, you’re not alone for believing that a diagnosis is only required if struggling and/or needing help at school.

The thing is, there will come a point when a neurodivergent child becomes aware that they are not like their peers and not understand why. They might come to the conclusion that they’re a weirdo and that there must be something wrong with them to be so socially rejected all the time.

I know this because I was that kid. Whilst I researched female autism to see if my daughter fit the criteria, I realised it fit me too. Then it became imperative that I get my daughter assessed (my husband didn’t agree incidentally- he believed that if she could mask well, having a diagnosis would only hinder her 😑) because I didn’t want her to carry the same burden of self-loathing that I had all my life.

She now understands that she’s different, and why. It still breaks my heart when she talks about being socially awkward and how exhausting it is to be social, but she isn’t blaming herself for not managing the things that most kids do effortlessly. She knows she’s a completely normal autistic person rather than a flawed neurotypical.

Thank you. Can I ask you what exactly will an OT assessment provide? Sorry it's all new and overwhelming.

No he doesn't have any support at school. To begin with it was mainly, from school's perspective, the social aspect of school that he struggled with. Although he's now about to go into year 2 and does have a small friendship group that he plays well with. He does also have other sensory quirks as you described - he jumps a lot and chews, frightened of hand dryers. Conversationally he can sometimes be quite repetitive. I can definitely see some differences between him and others his age. None of it affects him too much day to day and he loves school. However if he does start to struggle more in the future I'm hopeful that it will be easier for us to access any support for him with a diagnosis already in place. And I want him to be able to understand himself as he gets older, and why he might sometimes feel a bit 'different' to his peers.

Thank you, that's such a helpful post. I'm glad to hear the positives from having your DD assessed and I hope she'll continue to thrive x

Like another poster mentioned my DS was fine, a bit quiet perhaps, much preferred his own company and very fussy with food but nothing major. It was when he had to go back to school after lockdown all his cards came tumbling down and he just couldn't cope and was officially diagnosed with high functioning autism privately last year at 12 years of age. We too had missed subtle signs, particularly in early childhood as I had put it down to him being exactly like his Dad (undiagnosed but textbook ASD)

Now that he feels he doesn't have to mask anymore his ASD has come out in full force, he is so much happier in himself, understands that there are many others like him and that he sees the world differently. We as a family understand and can cope more now too. We know where his limits are, that he needs lots of time on his own, not to push homework, let him eat what he wants and when he wants it (within reason!) etc. We can now limit meltdowns as we know what the triggers are and can either head them at the pass or work through it with him. His diagnosis has been a godsend for us all.