gait disorder with ASD - where should we look to for help?

[pinkorkid]

DS, who has AS, has within the last year developed an unusual stiff but lopsided gait. At its worst it also involves stopping and starting at thresholds or changes of flooring eg wooden floor to carpet or pavement to grass and a sort of bobbing/head-ducking as he walks along. I think a lot of the head-ducking comes from extreme shyness/avoiding eye-contact in public and the stopping and starting is partly related to checking behaviours - he has suspected OCD as well.

He has had an assessment for dyspraxia with OT about 6 months ago which was pretty thorough and offered lots of exercises/advice on sensory issues but when OT spoke to physiotherapist re input on gait was told not in their remit. Although there are some indications he has hypermobile joints, all concerned think the gait issues are mainly psychological in origin. But help on the CAMHs front has been incredibly slow in coming and the disordered gait, rightly or wrongly, doesn't come high up on the list of issues to be addressed. All the same it is a major factor in his refusal to leave the house as he is so self-conscious about it.

Does anyone have any experience with this or similar and if so where did you get help from? Or who do you think I should be chasing? Thanks in advance.

both a motor & sensory OT assessment should be able to get to the bottom of it.
It will identify an movement problems but also look at things like bilateral integration, balance, co-ordination alongside sensory processing and behavioural stuff.
DS2's OT's were really able to identify his difficulties & more importantly put together some intensive therapy that has helped him cope.

I would get hip joints scanned to be on safe side and see orthopaedics just to rule out any other cause. Orthopaedics see ds re hypermobility and dd re ddh (hip problems).

"At its worst it also involves stopping and starting at thresholds or changes of flooring eg wooden floor to carpet or pavement to grass"

my brother who has OCD does this exactly as you describe. It doesn't stop him getting around though! I think some forms of OCD are classified as a movement disorder?

My dd has similar issues, she has Aspergers, hypermobility and low muscle tone. She has always had issues with texture of flring, she would refuse to walk outside as a toddler, she still wont walk on sand and when we go anywhere with pathing she wont step on the cracks , she's very slow on her feet, cant run on uneaven ground but her movement is better indoors (on flat ground), she can't ride a bike or a scooter. Dr's just keep telling us its due to her AS and her hypermobility combined with the low muscle tone but i'm not so sure, dd1's hips are turning, caused by her feet turning which has caused her knees to turn.

Thank you all for your replies - haven't been able to get back online til now.

slacklucy - OT assessment didn't show any definite problems with balance or bilateral integration but possibly exercises aimed at these difficulties would benefit ds all the same as he is convinced he cannot walk properly. I will contact OT again and ask if it would be worth trying this.

spiderman - do you know if there are joint problems which can cause limp without pain? I had pretty much discounted a physical cause because he doesn't complain of any pain/discomfort but I will query it with OT just in case.

bassington - interesting that you recognise this from your brother with OCD as we strongly suspect this is a big factor in his behaviour - avoiding and checking in case something bad happens.

Marne - sensory issues from the AS plus hypermobility go a long way towards explaining both our dc's behaviours but like you not sure it's the whole picture. It does sound worrying that you have noticed this cumulative turning with your dd's feet and legs.

I found a paper on this which might go some way to explaining why it happens, but not sure how to treat it. Both my Aspergers/HFA sons seem to walk in the same way so I thought it was interesting.

Hopefully the link will work!

www.ncbi.nlm.nih.gov/pubmed/16554961

I may be way off key here - but my daughter has Cerebellar Atrophy (which effects gait as well as many other things) and i'm sure i remeber reading somewhere that in children with ASD & similar disorders, can be caused by things to do with the cerebellum. Not sure what i read & where i read it though...

Neither of my dcs have been in pain with their problems (ds doesn't complain about anything hurting ever though).

My Dd3 also walks is an unusual way, not so severely as your ds though. She is the opposite of marnes Dd, she has to walk on all the different textures. So she steps on every drain cover, every ones driveway, any unfenced gardens and any changes in textures on the footpath itself. She also twists and turns her hands as she walks and of course is singing the whole time she is doing it.

She has ASD and hypermobility, she has been helped massively by having orthotics in her shoes, she used to fall all the time but now she hardly ever does. She also had physio for 6 months as she was only dxed hypermobile this time last year and had lots of posture issues.

I would definitely recommend a physio assessment and a referral to a podiatrist t
o properly assess his gait. I think you can self refer to podiatry, you can in my area. The podiatrist Dd3 sees said that loads of her clients have ASD/AS.

Good luck

Thank you guys for taking the time to reply.

WarmAndFuzzy - really interesting article and seems to chime with what Amieesmum has read about "differential involvement of the cerebellum".

spiderman - thanks for coming back about the pain question. I know what you mean about them not always telling you or being aware of pain. We've had a few instances where ds will nonchalantly mention eg a nasty skin infection that's obviously been brewing for days.

Ineedalife - interesting how your dd reacts so differently even though all our dcs have asd. I guess it's the sensory seeking versus sensory avoiding business. I think I need to follow up on the hypermobile investigation whether any of his symptoms are severe enough to warrant physio. Also hadn't even thought about orthotics/podiatry so will look into that, thank you.