DS1 ASC, told today that DS2 hypermobile

[DietcokeGirl]

I am feeling quite down. I don't think DS2 has ASD. I do think it's strange that I have one child with ASC and another who is hypermobile. I am so worried DS2 is going to regress now. I think this is going to finish me off!

I need to pick myself up and quick.

Hi DietcokeGirl I don't know the answer but I didn't want your question to go unanswered and I wanted to send you a big hug >.

Thanks carrots much appreciated.

I feel better this morning after a little weep. I have been told not to worry but just a bit panicky as you can imagine. I would not be worried at all if DS1 didn't have ASD but can't help thinking it's all going to go a bit wrong!

We are being referred to specialists etc so will know more in a couple of mths.

My ds is currently being diagnosed with ADHD or similar - different I know - and I was heartbroken when I had to send in the questionnaire describing his behaviour.

In the end I consoled myself by telling myself that he is exactly the same fantastic child, no matter what label the powers that be want to stick on him. It hasn't changed who he is and he is a great kid.

Hypermobile doesn't necessarily mean ASD and even if ASD did enter the picture you would be fine. We are made of stronger stuff than we think.

(and there is always Mumsnet!)

Hi DietCokeGirl. You were asking about this on the Friday night thread, weren't you? I have heard on here that it does sometimes go with ASD, but my friend's DS is very hypermobile, loose limbed, wears shoe inserts, didn't walk til 20 months but he is playing football every break these days. He isn't ASD at all, very sociable and chatty. I wonder if it's a similar combination of genes that gives the two problems? Sometimes you get one, sometimes the other and sometimes both?

If it's the only sign of ASD you are seeing in your DS2 then I don't think it's worth worrying about ASD. (Easier said than done, I know!) You are getting the hypermobility investigated, you are doing the right thing. There are others on here whose DC have hypermobility and some with ASD or ADHD as well. Hopefully they'll be about.

Thanks EJ, yes I mentioned it on Friday night thread but didn't want to hijack so didn't say too much!

I took DS2 to a private childrens physio - she said he definitely hypermobile and has referred him. I mentioned DS1 has ASC and she said they do look for other reasons why a child may be delayed in walking etc and she hadn't picked up on anything else of concern. She said he was bright as a button and fine motor skills 'normal' for his age. He is bendy but not overly bendy iyswim.

I guess only time will tell and like you say I will have to try not to get overly paranoid. DS2 has kept me sane as he is so happy and playful and so lovely that he calls my name etc.

I have come to the conclusion it must be genetic. We tried to convince ourselves it was the birth with DS1 (long story but was traumatic). It can't be just coincidence, in my opinion, that DS2 has hypermobile joints. Am going with the genes combo producing different results!

Thanks for the reassurance, hoping he will make a footy team!

DS has asperger's and is hypermobile and yep there does seem to be some relationship between ASDs and hypermobility - but they don't always go together

I'm hypermobile, didn't realise it till I had DS right enough because it's never caused me any massive issues, my handwriting's not fantastic and never was, I can't ride a bike (but that's partly circumstances) and I do things like go over my ankles a lot, but that's about it, lol. I'm fairly sure I don't have an ASD, rofl.

DS can't write legibly at all, his fine motor control is terrible, but he can ride a bike and isn't clumsy in a falling over way, my friend's wee one with AS and hypermobility has fantastic fine motor control, but can't ride a bike and can fall off the floor while she's sitting down.

DD is absolutely NT but I had her checked by the consultant as a toddler because her feet were turning out, she's officially 'on the bendy side of normal' lol, it doesn't cause her any hassle at all.

I also have a friend who's hypermobile (with no other conditions) who as she's got older it has caused a bit of joint pain and has a more than usual tendency for dislocating shoulders or elbows when she has an accident - but it's never affected her mobility in any way.

So, all anecdotal obviously, but I'm fairly sure it doesn't mean anything else has to be present - and it could affect him in various ways, so it's entirely possible that it won't cause him any major issues

thanks for this there is clearly some relationship but could be that DS2 is just hypermobile. He certainly doesn't present as asd/as. He has joint attention, social skills, points, imitates, is developing speech/imaginative play etc. In fact, he is lots of fun as I can PLAY with him. He would have to severely regress for me to worry about asd but hey that's the worry.

I have EDS as does my ds, which is an extreme form of hypermobility. In all of my research, which is extensive, into EDS and hypermobility syndrome I have not heard of a genetic connection between them and ASD. That is not to say that people with ASD can not have hypermobility, evidence on mumsnet alone would prove that the two conditions do combine, but if they were on the same gene, ASD would frequently appear as a concurrent condition for EDS and hypermobilie sufferers, and it just doesn't. Hypermobility is caused by collagen being contructed in too elastic a form in the body, they have not yet identifed genetic tests for hypermobility of hypermobile type EDS.

I know it is hard to put away your fears for your DS2, but just because he has hypermobility really does not mean that he will develop ASD, I promise. I hope his hypermobility is not too severe, you might want to come and find the EDS hypermonbility thread on here.....there are several mums with dc with this and other dx, and more than one condition dx.

I hope that helps.

SparkleRainbow thank you so much for this post.

I know, with my rational head on, that hypermobility does not = asd. However, I don't think rationally much these days!!

I went to see a private children's physio who said DS2 definitely hypermobile but no signs as it being part of any other condition eg. making it more severe. He met all his milestones eg. sitting up, rolling, turning over, holding beaker, feeding himself and has good fine motor skills. He just can't stand/walk unaided. He can pull himself up and stand at a table etc but he doesn't cruise. He is scared of letting go but physio says this is because he knows he hasn't got the balance. He wants to walk all the time but only holding our hands. He bum shuffles mostly but now pulls himself along on all fours (his version of crawling).

I am now waiting for a referral to appropriate specialists so things will hopefully become a bit clearer in a couple of months.

I did have a quick look at some posts on your thread so will take another look later.

Thanks again.

DS (4yo) has ASD, and DD (18 months) is hypermobile. She is (so far) not showing any signs of autism though so not sure if this is relevant

She is pretty bendy and has slightly low muscle tone in her legs and tummy, but other than that her coordination is fine (actually better than ds's!), and I was worried she'd be really late to walk but she was up and about at 14 months.

I know it's hard, it would be nice to have one child with no difficulties, but please don't worry there is a link between hypermobility and ASD. Probably all just anecdotal, as pp have said.

BSAB - fingers crossed our littlest ones are just a bit bendy! Yep had been hoping all would be smooth running with DS2 and going thru a slightly bitter phase. I am holding onto the fact that I absolutely knew something was not right with DS1 well before he was 19 months and not had any asd related thoughts about DS2.

i'm hypermobile, but I don't have ASD

How old is your ds2 dietcokegirl?
My ds actually walked about 13 months, which is later than my two dd's who do not have eds, but he was very late to crawl, incredibly late to roll over and other physical milestones. His coordination is poor, dd1 who is two years plus younger overtook him in gross motor skills when he was four. However his hypermobility in major joints is quite severe, and he has some rare challenges anyway, many, in fact most hypermobile people lead completely normal lives, unaffected by their increased bendiness, so try and hang in there. When are you expecting to get to see a rheumatologist?

I am glad you popped over and read some of the threads, they are a very helpful and supportive lot, everyone has different stories, so there is quite a wealth of experience.

Sparkle DS2 is 19 months now. He has met all his milestones apart from cruising/walking unaided. I would say he was a bit more wobbly than DS1 at sitting up but he could still sit up at 7 months, rolled onto his tummy in bed at same time as DS1 etc.

I think it will be about 6 - 8 weeks to before I get appt with rheumatologist. I could go private but thought best to hang on for the NHS? Any thoughts?

colditz - thanks for your reply! Do you have little ones that are hypermobile?

To be honest I would wait for the nhs, that isn;t too long a timescale and it is free! As you are in a holding pattern effectively, you have concerns about his walking, but he is not obviously experiencing pain? (I assume) Late walking should come if it is hypermobility related. It is such a varriable condition, it affects everyone so differently. I can point you at some websites if it would help, not scary at all, just giovbes you an idea of the supportb out there, there isn;t much and they types of language consultants will use, and where to push them if there are not being proactive enough.

Thanks, will post again when I get an official diagnosis from the nhs. I am trying not to google/research now until I now more.

I don't think he can be experiencing pain. He is generally a v happy chappy, rarely wakes up once he has gone to bed (little dreamboat!), calpol only comes out when his teeth is cutting thru the gum as he doesn't suffer that much with teething pain. Surely I would know if joints giving him pain?

I think so, my ds used to cry and point to his legs etc! When you know more, or if you have more questions post again. Until then enjoy your little boys!

I'm hypermobile, my dh is hypermobile, half of my family are hypermobile, my ds2 is hypermobile. None of us have an ASD. Ds1 is hypermobile (actually, he has a diagnosis of Ehlers Danlos syndrome, hypermobile type) and has AS. The quality of his hypermobility is different to ours - with the rest of us, we were rather late walking but otherwise never found hypermobility to be an issue (I found it a big advantage, sports-wise). Ds1 appeared to find his hypermobility so problematic he had to be helped to learn to roll over, get to sitting, bottom shuffle, crawl, pull to stand and walk... and his body feels different - it doesn't provide the resistance in the muscles that ours do (ie he is also hypotonic). So, judging by our family, there is absolutely no point worrying if the only issue at the moment appears to be hypermobility, because that's pretty common. I see ds1 as having had a double whammy - unusually stretchy connective tissue as a result of inherited hypermobility and whatever it is that causes people on the autistic spectrum to suffer from hypermobility in addition to this.