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?

Thank you for sharing your experience, that's so incredibly helpful. I wish you and your son all the best x

Hi op my DD was diagnosed with ASD 6 months ago, she is 14 and I had no inkling that was a possibility. She has had multiple issues with anxiety and then starting refusing to go to school, lots of counselling too but nobody picked up on it. It was only when i got a private appointment with a psychiatrist that she said she was pretty sure DD was autistic. It was a shock and then it cost me another £1500 to get her assessed for ASD and diagnosed.
I really wish this had been flagged when she was much younger, I think it would have made a huge difference to her.

Primary schools are only just getting to grips with differences in the way that autistic girls present (as opposed to boys). My own MSc research suggests that autistic girls are extreme people-pleasers with teachers, as they fear being in trouble.

I teach secondary and we’ve had a lot of EBSA (school refusal) amongst autistic girls, because school makes them so anxious. I believe your DD would really benefit from an assessment ASAP, or at least getting on the waiting list, so that school can formulate an IEP.

(PS my own DS1 was diagnosed autistic at 7; ADHD at 8).

When you say "much later" in your title, do you mean that you feel 5/6 is late to be diagnosed

My son was diagnosed as autistic at 14 and my friends brother at 35, so it's definitely not early!

Can you keep a diary of the behaviours you think are relevant and then you will have evidence to provide if necessary?

Also agree that it's better to get the ball rolling when there are no problems as these things take years. And it might be that some difficult situations occur at a later date.

Hi OP, I'm mum to ND teen, who was notably different from 5, but took until 10 to diagnose.

I always read posts like this to see if there are any similarities with DS to let the OP know, but in this case, really there aren't. DS has ADHD F90 moderate - severe.

What I would say, is go private for the diagnosis as soon as you can. Once you have that, you can take it to the NHS and use their consultants.

From 5, all his school would say, was, "have you considered autism?" No. I haven't, I'll look....no, that doesn't really fit how DS is, do you have any other thoughts. "Ummmm, we can get someone in to assess him for autism" No, I really don't think that's it. "So, shall we get someone in to assess him for autism?" FFS. Sure, if that's the only word you know. "Ok, so his assessment came back that it's not autism" fuck a duck, you don't say Fine, so what do they think it might be then? "Oh, they don't look for other conditions, it's just an autism assessment" Thanks for that. Meanwhile, we'd been on a waiting list to get an assessment via the NHS for nearly 2yrs and had only had one GP appointment as part of that process and remained in the queue for the next step.

When I finally had enough of no one doing anything and the senco team being more than useless, I went private.

Private consultant: Session one, just me, explaining DS and his behaviour. Session two, her with DS for literally 1.5hrs while I sat quiet on the sidelines. A phone call the next day to explain his almost textbook diagnosis of ADHD, the paper work will be in the post tomorrow, please take this to your GP and fast track to their ADHD consultants at the hospital.

Also this meant evidence to put with our DLA claim. I can now claim carers allowance too. Financially this brings in over £700 p/mth, which helps no end with replacing things he breaks and that it's very hard for me to get any work done because I'm permanently in meetings with doctors/schools/having to sort out the latest incident he's involved in.

As soon as you can, I'd recommend a private diagnosis. It's one hit of cost, but worth its weight in gold.

My DD was diagnosed with autism at 11. At 5/6 I'd say she struggled less than your DD in that she loved school and had a few friends. There were definitely some signs though - hand flapping and jumping, restricted diet, talked a lot and didn't understand social norms, made fairly brief eye contact. She hit all her baby and toddler milestones though and because she was really happy we didn't really think about autism until she was 8 or 9.

Thank you for sharing your experience, lots to think about. Considering going private if DD's dad agrees as at the moment he's in denial. I suspect he's an undiagnosed ND too but knows how to mask really well.

Absolutely this!

I'm glad you found it helpful. Wishing you all the best with your daughter too X

Yes, DH was the same. Denial. Not wanting a diagnosis because he was convinced it would be a hindrance. Didn't want there to be anything "wrong."

Interestingly, he also has ADHD, diagnosed age 12. Won't listen to anyone or take anything for it. Thinks he's not that bad. That's another story.

He has, however, somewhat changed his tune now DS gets extra support in his exams, a much more understanding and tolerant school, a calmer (medicated ) and just all round nicer DS, and £700 a month to help us as a family.

We have toddler twins also now. I know the boy has ADHD. I know I'm not a doctor, but with DH having it, or being hereditary and 15yrs of parenting DS, I could pretty much write the handbook on it. The girl, does not have it. I do suspect the girl is autistic though, but I'm not too knowledgeable on this other than she ticks a lot of boxes on the list so to speak, so I need to do a lot more research there myself first. So that's going to be fun, when we need to broach those avenues. He won't want an assessment for either of them.

I think you’re right on the money OP. My money would be on ASD primarily but they can go hand in hand together a lot.

My DS is 7 and he was recently diagnosed with ADHD. Start the process now, it can take years.

Good luck to you and your sweet girl.

Mine were not diagnosed until 12 and 13. I knew something was up from baby/toddler years and everyone (family, friends, teachers, doctors) said for years “oh all kids are like that” so i thought maybe i was a rubbish mum or just being dramatic. Turns out they got to breaking point before people listened, then a long dx process, with kids in massive horrible violent depressed burnout unable to attend school etc. Wish i’d trusted my gut.

You reminded me that I sometimes mention DD's quirks to the nan of one of DD's friends (they've been friends for a while) and she always says that it's because DD is an only child (she was an only child herself) and so they are always a little different, at least socially 😶. I did think of that but then DD used to have loads of playdates, has gone to nursery since she turned 2, so she had plenty of opportunities for socialising.

Omg people are so insensitive!!

Sorry OP, haven't RTFT, but I would start seeking an assessment straightaway. There is no point in waiting. My DC was diagnosed aged 8 (we went private after waiting a year). I really feel it might have helped a lot to have the diagnosis earlier (as DC ended up school refusing and dropping out). However we didn't suspect in time, didn't know anything about autism or diagnostic pathways at first. No real speech issues and was sociable etc so didn't see the stuggles at first (nor did teachers or gp, or if they did they didn't say).
Knowing what I do now, I wouldn't wait.

https://www.autism.org.uk/advice-and-guidance/professional-practice/occupation-therapy

https://www.childrenstherapysolutions.co.uk/services-2/assessments/occupational-therapy-assessment/

I don’t know why men are so resistant or in denial about their children being ND but it’s so common @ChristmasCrumpet. I literally went behind my husband’s back to get a referral and didn’t tell him for months.

Also what you say about your twins possibly being ADHD/ASD respectively is interesting, because I see ADHD parents of autistic kids (or vice versa) and it seems so obvious to me that they aren’t necessarily two separate conditions, they’re the same thing with the same genetic basis, they can just present differently.

There is some overlap of "quirks" (I don't know the right word here) for both, definitely. But they are two independent conditions, and very much not the same thing. They often come hand in hand, but you equally can have one or the other.

DS is almost the poster child for ADHD, but not autistic.

@ChristmasCrumpet my DS only has an ADHD diagnosis too. His referral covered both, the paediatrician said there isn’t enough evidence for an ASD diagnosis right now (age 7). I’m not certain he doesn’t have ASD as there’s so much overlap but to be honest ADHD is the one you can medicate so that’s what I would’ve pushed for in the first instance. DS also very likely has dyspraxia, again lots more overlap.

@freespirit333 Can I ask you what behaviours make him ADHD but not ASD?

@freespirit333 was your post directed at me, or @ChristmasCrumpet as that’s who you’ve quoted?

I’m not convinced my DS doesn’t have ASD as there’s so much overlap anyway (he also has DCD - also a lot of overlap). The questionnaires we and his school had to complete were obviously geared at both ASD and ADHD, and the paediatrician said at this current time, on what was filled out, there was enough evidence for an ADHD diagnosis but not ASD. He is only 7. From looking at the questionnaires, from memory, the things that didn’t “tick the ASD box” if you like were the fact that he has some close friendships, he has a sense of humour, he laughs at the same things his classmates do, he doesn’t have any repetitive movements like hand flapping. All pretty stereotypical stuff as that’s the kind of things they asked in the questionnaires.

Thanks for that post Jellycats, you’ve articulated so well why it’s meaningful to have that label.

@freespirit333 sorry it was directed at @ChristmasCrumpet . But thank you for sharing, that's very helpful to know x