Unusual movement/ breath holding behaviour. SIL says possible autism.

[NTM6655]

Hello everyone,

My 18MO DS has been doing an odd movement behaviour since he was 5 Months. It started with him ruining his knees together in a cycling motion and it developed over months to him doing that alongside belly crunches while panting and often crying. He added in pulling on bibs/clothes around his neck but had stopped doing that and now stretches his arms out straight and moves his wrists round and round.

GP thought focal seizures (it does look very seizure like) so we got referred to a paediatrician with a specialism in epilepsy and movement disorders. She ruled out epilepsy and movement disorders as it is not involuntary (he opts to ‘trigger’ himself at times) and it is always in response to a stimulus (such as dressing him or putting him in a pushchair/car seat). He’s also developing normally. She said it was a gratification type behaviour and he would grow out of it.

My SIL works with children with autism and she raised concerns that she has seen signs of autism because (she believes) he doesn’t make eye contact and interact with children his own age. He also used to cry when we went to my in laws so she put that down to him not liking loud rooms. I don’t see the same as he makes plenty of eye contact with me and my family and I’ve seen him play with children of all ages. I have taken him to musical baby groups that are deafening since he was a few months old and he’s never reacted to that noise.

I feel like she doesn’t see him much and has made a judgement on minimal information. However, now I’m doubting myself and second guessing everything he does. He is my first child so I don’t have a bench mark on what is usual for his age. I’m also concerned that his gratification behaviour is a type of stimming and also points to autism? I don’t know enough about ASD to know if he can act typically around me and not around other people?

Does anyone have any experience of that type of gratification movement and/or have an opinion on the autism suggestion?

Thank you xx

[NTM6655]

Rubbing* his knees. Not ruining x

[livpotter]

Hi,

I don't know whether what you've written indicates autism but I would say that my ds has very good eye contact with me and close family members and hardly any with other people. In fact I think the reason we didn't realise he was autistic initially is that he was so attached to me I couldn't really see the way he interacted with other people.

I remember even when my ds was tiny he would be in his cot with his arms straight down by his side, fists clenched and marching his legs while making a 'huh huh' noise. As he got bigger he did lots of spinning and flapping.

It's very difficult to know about milestones and what's 'normal' with your first child.
There is this https://www.foundationyears.org.uk/files/2015/03/4ChildrenParentsGuide2015_WEB.pdf
Where you can track what your child should be doing at particular times.

If you are worried about autism then you could also use the M-chat test and see how your ds scores.

Because you mentioned about the bib pulling it might be worth looking into sensory processing differences. the out of synch child is a good book with lots of checklists and easy to read.

[NTM6655]

Thank you. I just took the M-chat and he came out as low risk. But is that because he does everything normally with me? Or would there still be signs? He doesn’t engage with my SIL as well as he doesn’t know her and I think they irritate him as they’re pretty full on. But should he still try to interact more with people he doesn’t know? I tried the link but it’s broken for some reason. I’ll look up sensory processing and that book. Is a sensory processing issue a disorder or can it be a ‘normal’ (sorry, for want of a better term!)) developmental process? X

[livpotter]

We didn't realise ds was autistic until he was 2.5 and that was mainly because he had a speech regression. In hindsight there were lots of red flags, sensory seeking behaviour, difficulties with transitions, not minding being left to his own devices, repetitive play, wanting to be in control etc. So I think you would probably pick up on things like that.

18 months is still very little and I imagine if he doesn't spend much time with her he's probably just not comfortable around her. I would also probably not worry too much about what she thinks if she's only interacted with him briefly!

If you google Foundation Years What to Expect you should come up with the right document, sorry about the link fail!

It totally could be a developmental thing. It was the bib pulling and the way you wrote that he tends to react to things like getting in the pram/dressed with his movements. I just wondered whether he was doing the physical movement to cam himself before doing something he doesn't like?

In any case I always feel that the best way to not stress about things is to read lots and learn as much as I can. I didn't mean to overwhelm or worry you, I hope I didn't.

[BarbarianMum]

Try googling "complex motor stereotypy" regarding the movements. My ds2 has this and we wondered for a long time whether he might be autistic (his uncle is). Ds2 also scored low on the MCHAT and now at 10 I can confidently say he's not autistic but he does have CMS.

[NTM6655]

Thank you both and sorry for the slow response. I’ve looked into everything you’ve both said. I just had a call from the paediatrician and a group of neurologists reviewed the videos and have asked for a CT scan but are guessing it may be complex motor stereotypy as you have suggested Barbarianmum. If you wouldn’t mind, I would be very interested to know what happens with your son/ if there has been any sort of therapy treatment and how daily life is. I’m reading about CMS but not getting a good picture of what it really is. I’m happy to give you my email if you are happy to share but would like to do so privately. Thank you x

[Mumsy1984]

Hi’ how is your baby now? I have a baby girl 14 months and she does similar thing in pushchair. Really worried about it !