Hyperactive at home, not at school

[mrsbaffled]

Hello, we had the dx letter from DS1's ASD assessment through the post last week. I am going through it carefully now trying to understand it all!

The upshot was that he has ASD features, but fell a tiny bit under the dx criteria, so no dx given.

Anyway, he scored very highly for hyperactivity at home, but none reported at school on the questionnaire. Why and how can this happen?

Happens all the time.

Schools have different agendas to you for identifying needs. They might not notice the behaviour. The behaviour might not be seen as all that extreme if they have had experience of other children with more severe difficulties.

But, it is most likely that your ds is hyperactive at home to deal with the anxiety caused by holding it together at school and overriding his instincts and emotions out of fear of getting punished for something he didn't understand.

Ironically the paed noticed it in her school observation. He was standing for over half the time in the maths lesson, where everyone else was sitting, but came back as zeros from class teacher (unobservant man, no longer at school).

This meant no ADHD considered. Do you think it could be ADHD or more likely just letting off steam?

School did not notice a lot of behaviours in our OT questionnaire (even with a copy of ds's eye disorder dx report) they still wrote 'no difficulties' under 'visual'! According to school, ds had no difficulties and had lots of friends.

OT observed that ds couldn't sit still, when he sat, he bounced his legs up and down, fiddled with pens, shoes etc. He slumped forward on the desk at every opportunity. He obviously wasn't paying attention to instructions as he was always the last to do everything and appeared confused and completed very little work. She also noted that despite sitting at the same table as others, he didn't interact or if he did try to interact others ignored him.

OT was very critical of school not noticing any of the behaviours she observed (although she did give them a get out clause ie 30 children in a class, might be hard for them etc) and it didn't stop her making OT recommendations.

I would have thought a paed would take this into account.

DS was running cars along the radiator back and forth for half an hour.

Schools state: Imaginative play

DS was flapping in the playground for 20mins so school give him a bell.

School state: Exploring the musical instruments

DS was running around the parameter of the playground and spinning

School state: Developing his gross motor skills.

In short, many schools don't have a clue.

Ds got a dx of ASD despite previous school literally opposing it.

Do you think the Paed based his decision on school input? Ask Paed what criteria he used? What kind of Paed was he? Based on what assessments?

Ds received his dx from a Child Development Centre, after being flagged by SALT as suspected ASD, passed onto specialist ASD SALT for further assessment and then child Development Centre paed who specialised in ASD, then further assessment from another specialist ASD SALT. A multi team approach including an EP. I would have concerns about a Paed dxing solely on their own, based solely on what you and school report.

I always remember from an LA EP report Star, she had observed ds in the playground pacing backwards and forwards in straight line along a grass verge for the whole of playtime, away from other children 'not seeking to engage in play with any other pupil' and when she tried to 'engage him' he just kept repeating 'I want to go home' or muttering incoherently.

She put this down to 'ds being aware of her presence as she had assessed him earlier in the day'

Which tied in nicely with school's perception of ds, he acts this way for your benefit.

Sometimes experts believe what school tell them too.

The assessment was 3di which is good for complex and high functioning cases. Most of it is based on my answers to a massive questionnaire. He scored highly in 'inflexibility of thinking' and just under the threshold in the other two areas of the triad. It rings fairly true for me.

The hyperactivity concerns me, though. As it needs to be observed in two settings. Marked at home, also at church, but they didn't ask about that. As I say paed saw it, but school just denied it.

In terms of what happens now.....we are still allowed to go on the ASD course as we will still benefit from it. Plus his difficulties are on paper and school can't deny that.
I have requested a meeting with class teacher and SENCO to talk about the results and discuss teaching methods. The paed says he should go on a transition group for transfer to secondary. In theory help is based on need (written down) rather than dx, so we still may get everything we need......I need to become more pushy, I think, though!

Oh ok, I thought you weren't happy with the outcome. I thought you suspected ASD.

As Star said many schools just don't have a clue or maybe they don't regard standing instead of sitting as hyper or put it down to something else.

Having a dx shouldn't really matter, support should be given on needs, but if they are not noticing the behaviours/needs then they wont be supporting the needs.

Is there anyone else who could observe your ds in school?

I have found that support isn't given on needs (even with a dx) it is given on how it affects school, rather than the child.

I help in school myself. I have him at a lunch time club. He is the one child who doesn't sit nicely to listen but bum shuffles round the room. Very different behaviour to others.....will talk to SENCO again.

Claw, i do think he has AS, but I don't feel able to do any more on that front just at the moment. They picked up on the things that worried us most and at least we have a written record of difficulties. Shame it was SO borderline.

That is what concerns me about paed's (who are often no more than children's dr's) dxing or not based on little more than questionnaires, rather than a proper assessment. I saw about 3 different paeds, who told me ds didn't have ASD based on nothing more than us sitting in their office with them or ds doing a few developmental tests ie building a tower of blocks etc. One even told me ds was 'too bright to have ASD'. As soon as experts who specialised in ASD saw ds, it was so obvious, even I wasn't aware that ds really struggled to do half of the stuff in their assessments. They really knew how to highlight his difficulties.

3di is just you answering questions, which are then feed into a computer?

Basically, yes.
We did have an initial meeting where she met him and decided whether he 'might' be on the spectrum. Then sent a colleague into school to observe. Then based on that she then decided to do the 3di to work out what issues he really has. It took hours and hours and was very comprehensive.

This is our second round of testing. Two years ago they were looking for dyspraxia and dyslexia. Again he fell just under threshold for dyspraxia. He has been dx with SpLD though, but that is all he 'officially' has.....

To be fair she did ask a lot of further questions and root around for examples as well. She made us think of things that we hadn't thought of before.

For us ds had already been seen for various assessments ie OT, SALT, dietician etc prior to dx. Although I will say when I observed the ASD assessment through a 2 way mirror, there were loads of things I felt sure ds would be able to do or to answer, which he clearly couldn't. I was quite shocked, I thought I knew my ds really well.

For example I had been asked the question does ds let me join his play, my answer yes he does, no problem.

However when the SALT kept hinting to ds about wanting to join in with his play 'im really good at Lego', 'I like playing with Lego' etc, etc ds just totally ignored him.

It never occurred to me to that unless asked directly ds wouldn't pick up on hints about wanting to join in.

Another ds would let me join in and change the play, no problem. I hadn't notice that he wasn't actually joining in with my ideas though and just continuing with his own.

There was loads and loads that I would have answered no problem to, until I saw him demonstrate exactly what he meant.

However when the SALT kept hinting to ds about wanting to join in with his play 'im really good at Lego', 'I like playing with Lego' etc, etc ds just totally ignored him.

dd2 did this too, totally ignored all (deliberate) references to his own family, in fact never acknowledged assessor's presence at school during lunchtime or at afterschool club (he sat next to her so he could hear her conversational input).

A few professionals have asked me does ds have ADHD when they have visited us at home. He really cannot sit still to answer questions. He will sit bouncing his head/body off of the settee when they are asking him questions, hanging upside down from the settee, literally climbing the walls in the hall way (narrow hall way) and he puts his feet either side and climbs, climbs up the outside of the stairs, lays on the floor etc, etc.

He doesn't have ADHD, he has ASD and lots of sensory behaviours.

In school and out and about he modifies his behaviour and gets his sensory input in other ways, laying across the desk, leaning on furniture or me, fast walking everywhere or skipping, bouncing his legs, fiddling with shoes, spinning around, fiddling with pens, skidding on the floor in the supermarket etc, etc.

claw 2 - you have just described my son. And school don't believe me...even with a community paed involved and referrals to OT and SALT and Orth.

Pinkballet previous 2 schools didn't believe me either. I suppose its hard to believe something you cannot recognise or understand, especially is your child is high functioning and good at hiding it. I think the difference between a good and bad school is them at least TRYING to understand

And yet it was so obvious to his last school (infants) - but there were only 6 in his class and he now cares more about how people perceive him. I just keep getting raised eyebrows and "Oh, really? But he does amazingly well in school if that is the case!" And yet, in his initial report from the paed it's noted that he's operating only just above the SEN threshold according to what the school reported back. It's beyond frustrating and I don't know where to start.

Good grief. THIS is the first result that appeared when I asked about hyperactivity not seen at school when obvious everywhere else!?

I appear to be on round two consulting with my former self!!!!

Just to say - I am finding this discussion v helpful. I have had the suspicion for about 4 years that ds (now 7) has hyperactive ADHD but have not tackled it with school as I expect it to be seen as middle-class interfering mother strikes again. Also, abusive ex husband will construct as many barriers as possible. I watch and wait until I have enough evidence to have a better chance of getting somewhere

My dd was assessed aged 16 ( her younger sister had just been dx and it made me realise 16 year old was also ASD, I’d just never understood the condition previously) - was told she had a very spiky profile, they couldn’t quite work her out … (almost) exact words “we can’t give a dx of ASD as she likes music and can travel to college. However, we have no doubt if she’d been through the system aged 6 or 7 she’d have bee given a dx of ASD”

WTAF??!! I stupidly didn’t pursue it further at the time due to many other issues going on. She’s now 22 and encounters many problems due to her (I’m pretty sure) asd. She won’t go for adult testing now as she says it won’t help her so what’s the point. I could kick myself for not doing more when she was younger.

If I were you, I’d find some way (I don’t know how unfortunately) to pursue this/fight further for your ds.

Very common. Child holds it in all day at school and all hell breaks loose at home! Children are often taught they have to behave in a certain way at school. But home is their safe space where it all comes out.

My son is diagnosed with asd, his behaviour has been shocking at home. Not so much at school and the school don't see the half of it. Having a real bad time getting the right support