G&T, ASD, ADHD? Going round in circles with dx

[CrowieGirl432]

Hi all

Is there anyone out there with a 2e child who can share their diagnosis journey??

I feel we are going round in circles a little and it’s hard not to feel frustrated.

DS 5 is bright, intense and argumentative - and can be incredibly difficult at home. He’s very outgoing but other kids don’t seem to get him and he often ends up in conflicts over sharing/turn taking. V strong sense of justice. He can’t sit still/pay attention in class. Very easily distracted. Yet he is keeping up with the work.

We’d seen a private child psychologist after some bad behaviour at school and based on our report and school’s report she suspected ASD. I then saw NHS community paed who recommended we go for formal ASD assessment.

All okay - we are getting somewhere. Then psychologist sees him in clinic to start ball rolling on getting an assessment and says she can’t see any signs of ASD - but perhaps ADHD?

Part of assessment was IQ test that he could not sit still for /attend to. He still got average to superior scores. I don’t know how much credence we can give it.

Anyway, it just feels like one step forward and two steps back at the moment meanwhile behaviour is pretty horrible at home and school is up and down.

Can anyone give me any advice about the process? Am so desperate to understand what is driving his difficult behaviour. Will we ever get an answer?

Should add, school say he is ‘very able’, and psychologist said he had strong intellectual skills. But because he wouldn’t engage with the tests, we are none the wiser really on his strengths/weaknesses.

Watching with interest - in the same boat with dc (although he hasn't been identified as gifted, but I think that without his attention/social issues he'd be very talented in some areas). At the moment we're going from pillar to post and each time getting a different perspective but never quite getting as far as diagnosis. I'm just hoping to get it sorted by secondary, I feel like that's when the level of need really ramps up. So no advice really, just some solidarity.

I have a child like this who is now 16 and in the middle of his GCSEs.

When he was 7 we asked the GP for a paediatric referral as he was having trouble coping at school. Paediatrician diagnosed ADHD and referred him on to the tertiary neurodevelopmental centre. We had to wait over a year for an appointment but he was finally assessed and diagnosed with Asperger's/ASD.

He didn't meet the criteria for a statement (now EHCP).

The primary school was very helpful in making adjustments for him:
Touch-typing lessons as he struggles to hold a pen properly.
KS3 Science teaching (1:1) from Y4 onwards.
KS3 Maths teaching (in small group) in Y6.

He is now at a secondary school which has both a strong SEN department (over 20 full-time staff who have a lot of experience with ASD) and an unusual number of highly able students.

With the support of the school, he has learned strategies to cope in a neurotypical world, and has no extra adjustments at school apart from being allowed to type in lessons & exams with lots of writing (e.g. English).

He is predicted grade 7 or above in all his GCSE subjects.

He hopes to do A-levels in Maths, Further Maths, Physics and Chemistry, and then plans to apply to study Physics at university.

I appreciate it! I feel like I’ve read every book out there and filled in so many questionnaire and scales etc but we are still in the dark. Good luck with your investigations.

**Eatsleepworkrepeat ^

**TheThirdOfHerName Thank you for sharing that. So good to hear a positive story. Best of luck to your DC on their GCSEs.

Ds1 is 16 now. He is gifted with ADD and ASD traits In other words, it isn’t really possible to figure out which bit is causing which behaviour/ difficulty - for a few years I tried to figure it out, but over time I’ve realised that it isn’t really possible, nor is it constructive.
We know his strengths. We know his weaknesses. We try one thing. If it doesn’t work we try another. All kids are unique and to try and fit them into a particular box or dx isn’t usually possible.
The psych can’t work it out, we we aren’t going to - hence the mush mash if official dx.
There are a lot of books out there about 2e dx if you are interested, but none of them actually delineate if x then y.
I have two 2e kids. The one with cerebral palsy is far more straightforward, but even she quite often shows very Aspergers type behaviours which are probably just OEs. (Oh and she did pick up an anxiety disorder dx too).
Kids are very complicated.

Will he sit still / concentrate for things he's interested in?

Marymulis and thirdofhername have hit the nail on the head. Diagnosis is a long process and you may never get an 'answer' . Could be due to being g&t or ASD or adhd. Or all of them. Or none of them. Sometimes it is more effective to ignore the labels and look at what works for YOUR child. It can be helpful to start with strategies that work for some kids with ASD as these generally work for many children with or without ASD. Strategies foe ADHD tend to be similar. But in short look at the child rather than the label. It will be a matter of trial and error and it can take a while to work our what works but there are many success stories. Also,as your child gets older he may be able to identify himself what is helpful and what is not. Best of luck.

**Savagehk yes - to an extent with the sitting and concentrating.
He will sit and work on ‘junk modelling’ and he LEGO. Not for infinite amounts of time but he can concentrate. We’ve been trying to do guided meditation together and he can sit and breathe and listen to those apps for a good ten minutes at bedtime.

I didn’t say that we are pretty sure he has sensory processing issues - seen an OT. So that is mixed up in there too.

**okeydokeygirl. Thank you. Very wise words.

I’m just so desperate to ‘fix’ things and get my hopes up with every appointment etc that this will be the key. But so far it’s just become increasingly confusing.

The IQ test was particularly frustrating - as we’d really hoped that would give us some good info and as it is it’s pretty meaningless (and you are not meant to do them again for another two years).

So yes - a change of mindset is in order for me, I think.

I think what PP have said it totally right. I work with parents through the diagnosis process and quite often by the time they have been diagnosed the school knows the child's strengths and challenges so well it makes no difference to the provision in place. I once read if you know a child with ASD you only know 1 child with ASD as no two are alike. The same as children without it. The key things are for the school to understand your child as best as possible and start from there. Good luck x

At four ds looked NT when he started nursery. Then TA picked up that he was having some sensory and physical issues so in nursery we went to GP.
They sent us to Paediatrician who said he suspected ASD as well as some sensory issues and physical issues. He requested ASD team see us and Ot. ASD refused.
Around same time he started reception and within a term the very experienced teacher said that she believed he was gifted as he was doing things unusual for his age (we thought these were all normal).
In reception summer term he saw OT who assessed him and then returned a report to us and paediatrician. He diagnosed Dcd and sensory issues.

When reports came back OT, paediatrician and the school sent another letter to ASD team asking for assessment. This time they accepted him after a form completed by TA, current teacher, Senco and us was sent in.
Now waiting to see them. Hopefully by end of year we will get an initial appointment and maybe a dx within a year.

We need to wait until after ASD team to get the EHCP that ds needs to get his specialist equipment. It’s frustrating to wait for two plus years.

sMy DS is 4 but otherwise, much of your description could apply to him too. "bright, intense and argumentative" - yup. "Can be incredibly difficult at home" - hell yes. "He’s very outgoing but other kids don’t seem to get him and he often ends up in conflicts over sharing/turn taking." "V strong sense of justice." And selective, erm, willingness to pay attention/sit still. All sounds familiar. Oh, and some sensory sensitivities too. And he's just exhausting to parent.

We have not gone down the path of assessments or diagnosis (or not yet). He starts Reception in September so we'll see how things play out, but we're wondering about all sorts of things, including ASD.

However, if it's in any way reassuring, most of your description would have applied to me at 5, too. As it was the 70s, nobody diagnosed any conditions or applied any labels - the school eventually did an IQ test (v v high number) but beyond that, they just dealt day to day with what was in front of them. And I think I've turned out OK, in spite of being accelerated by 2 years at school which wasn't a great experience at the time. Went to Cambridge and got the top First in my year for subject; decent but non-stellar professional career in which I've prioritised work-life balance; house. husband and child. My teens and 20s were a bit of a bumpy ride but the social and emotional stuff kind of levelled out by, ooh, about 30 :-)

There is so much in the media at the moment about under-diagnosis of girls and women with ASD, that I've occasionally wondered if I was part of that statistic? But I've completed various screening questionnaires out of curiosity, none of which scored me remotely close to the cut-off threshold for further diagnostic investigations. And I'm pretty sure I was "just" an intense, geeky, socially anxious bright kid. At 5 I'd probably have ticked some boxes on the list of "red flags to refer for ASD assessment" though.

I'll come back to this later as I'm just off to school, but ds1 is 2e, diagnosed with both adhd and hf asd (aspergers) earlier this year, he's in year 3.

DS1 has a diagnosis of high functioning ASD and ADHD. He is also G&T.

His teacher in year 2 knew we had concerns, and pushed for him to be assessed. We met with the SENCO and filled in tons of forms this time last year. The school nursing rep thought having reviewed the forms that he likely had ADHD and should be referred. The referral was accepted, and we waited for a CAMHS appointment for assessment. This happened in November, after which we were told that he probably didn't have ADHD but did have ASD, and to wait for the report.

The report arrived in late January, and gave us a diagnosis of both.

Nothing has changed since...he's still not enjoying school, mostly because of social issues. He doesn't show what he can do at school often, and frustrates his teachers by appearing not to be listening (looks out of the windows, at the walls, reads his book) and then getting the answer right to whatever question they ask. He has many sensory issues, none of which have really been addressed because school are currently refusing to make an OT referral even though that's what the report says he needs.

Having the diagnosis has meant that we as parents are much more accepting of his quirks, and understand more about why he does certain things. It has also helped us find ways to communicate better. But currently this isn't following through to school, and I don't quite know how to make that happen.

Sorry it's not too positive, I'm happy to answer specific questions if it would help.

Thank you all so much for taking the time to reply and share your experiences. It makes me feel a lot less alone.

One theme is how long and muddy the path to a diagnosis can be and then, I suppose, how having a diagnosis isn't even a magic bullet to sort everything out.

I've spent today making more appointments, got another questionnaire to fill in, and have been at an sensory processing education session.

We will keep on, keeping on. Good luck to everyone and thank you again for replying.

OP my DS is 12 and has an adhd diagnosis. It took bloody ages and we had lots of camhs people saying stupid things he whole way through . These included ‘he isn’t bouncing off the walls and he’s playing with the legonso he can’t have adhd’ to ‘you are perceiving meltdowns becaus you’re a girl and you have three boys’ .

Children’s behaviour in clinics is notoriously untypical. I call it ‘reverse white coat syndrome’ - put a child with adhd in a quiet white room with a whole set of adults paying him attention, give him a new and engaging toy to play with. That child isn’t going to behave as they would in real life.

For information - important this - ADHD has an element of hyperfocus - so attention can be like a searchlightgiven the appropriate stimulus - a computer game for instance with lots of very engaging stimuli. Often this isn’t known as a typical symptom and used as an excuse that it ‘isn’t adhd’. People with adhd crave to be able to
Focus and are drawn to activities that allow this by soaking up all their attention. Their attention is short curcuiting all the time and they need a powerful thing to stop that

Hello. Sorry, jumping on this post for help / advice!

DS is 10 and will be sitting the 11+ for grammar and indie in January. We've always always been told by his teachers that he is very clever by but is quite scatty, losing things all the time which is quite disruptive for his classmates, but can focus without any problem when he needs to and can finish his work quickly, sometimes too quickly and can make really silly mistakes. He can fidget when he is concentrating, eg kneeling up on his chair when he is working. He is scatty at home too (as is his sibling!). He is good at both English and Maths. He has done well in mock exams. His teacher says that he would have been categorised as gifted and talented in the past, but I'm beginning to wonder if he has ADHD, or something similar? I don't want to label him, but I am wondering whether it could help?

Thanks!

Sorry also he can be very obsessive about certain things / subjects and his memory is very good - he can real off facts and figures off text he has read recently, as well as remember weird things / facts from the past that we all have forgotten. Also, a touch of hypochondria, if that is possible for a 10 year old! Does any of this ring any bells to anyone? Thank you!

Watching with interest too. Also got a 5.5 year old DS - very bright, intense and argumentative.

We’ve had some unpleasant behaviour at school too. Although I’m not convinced it’s any worse than anyone else’s. He clearly has far more energy than all the other kids. And is also very prone to distraction. He gets very focused on stuff he’s interested in. At the moment he’s really enjoying Phonics and his reading is coming on very well. He seems naturally good at maths but his writing and drawing is terrible.

We’re at a small village school and we’ve found his teacher hasn’t warmed to him and one of the other parents has been quite unkind. Plus the grandparents and my DH seem to struggle with him and the parenting he responds to ie. firm boundaries, lots of opportunities to let of steam, notice to transition to a new activity... So I’m still at the point at wondering if there is something or he just has a spirited temperament and is high maintenance.

I have an appointment with a community paediatrician in a few weeks and I’m worried that we might get a diagnosis that doesn’t help us.

Far what it’s worth, I was the same at his age. Restless, over active and mischief. Then as I got older I was quite away with the fairies and still am. I’m doing well now though and have lots of techniques to manage myself.

Planky sounds like ds6 who is classed as g and t and has diagnosis’s of dcd/dyspraxia, sensory issues and is suspected ASD. He’s a PITA at school when bored.

Sounds a lot like my DS, Planky. We’ve been lucky in having a teacher who does get him and wants to support him. But he can be really difficult at school and sometimes aggressive. We had been making some progress but then he headbutted (!!) another child yesterday in an argument over who’s turn it was to go on a scooter.

I found community paed appointment helpful but not enjoying this limbo where lots of people are saying there is something not quite right - but no one knows what! I totally understand not wanting a label put on your DC, however. Anyway, if we ever get anywhere I will post an update. Could be some time!

Thank you catgotyourbrain Am trying to read up on ADHD and had come across this idea of hyperfocus. A lot of the ADHD traits do chime with DS, but I’m also mindful that he’s only just 5. A lot of ODD traits also fit him and I’ve been reading. Onwards! Thanks for replying :)