Visual impairment and ASD, a link?

[MangoMonster]

Just seen on an email from sensory integration network and NAS conference a talk about the following:

Autism is more common in visually impaired children than in fully sighted children. In this seminar we will explore the nature of autism in visually impaired children, and discuss meeting the needs of children who have a visual impairment and autism. We will focus on the Resource Pack recently published by the Royal National Institute of Blind People (RNIB) the UK's leading charity offering information, support and advice to people with sight loss.

Sorry if I'm being dense but is this link between ASD and vision common knowledge?

x post Mango

Thanks so much dolfrog. So wish I had been more on the ball and didnt just take eye consultants advice. Maybe if I'd have started some kind of therapy with the patching, things would be different. All this makes me hopeful in one sense but like a failure too. How could I not have realised this would have an impact...

Mango these consultant paediatricians need to take child development into consideration. Being obsessively focussed on one aspect of child health, eg eyes or lungs to the exclusion of overall development isn't good enough. IMO.
Do you have older children? Do you work with young children? It sounds like you have been on the case quickly.

I thought I knew what autism was. It was only when we were told that our DS might have it a few months ago and started looking at the symptoms I realised that lots of little things I'd worried about all added up to ASD traits.

oodles this guy is the top surgeon in the world for DS specific issue. I asked him outright, could it affect his development, answer was no, thats silly.

I am so grateful to him for what he did for DS, i.e physically repaired his eye and the after care was brilliant. However eye cases vary so much. DS was parched at 10 months, most children can be diagnosed at birth and patched ( DS specific condition meant this wasn't possible). No one thought... Oh he's 10 months, taking his strong eye way might affect his dev...why the fuck not? ... Sorry but I am grateful and angry at the same time.

No one wants to diss patching as it's the only cure for amblyopia... No ones even researching it, theres no alternative.

I would have still patched butni also would have done something to help the sensory deprivation if at all possible.

I don't have any over children or work with them. I too had no idea what asd was until august when a geneticist mentioned it to me. Thing is even a neurologist in peadiactric dev told me she didn't think the patching could have this much impact, but who knows.

My family and dps family have asd traits but nothing that was so hindering it was noticed.

I think it's the fact that he had sight then didn't at a crucial time of dev. Plus most parents don't to the reccomended hours of patching, we did.

So difficult to take scientific data on things so rare with so many variables. Just wish I'd not been so shell shocked and questioned more...

I don't want to complain a such, although maybe I should but I don't want someone else to go through this needlessly.

Mango I totally get where you are coming from. With our DS it was a choice of life or death. Obviously I'm very grateful that he is alive. I just wish his general development has been monitored. The NHS spent a fortune on keeping him alive (thank you taxpayers), but then just spat him out at the end of the process: off you go.

Yes it is difficult to make predictions with rare cases but I wish DS's doctors had flagged up that he might possibly have problems. We were told 'he'll have caught up by the age of five'! Yeah, right - in a rare case how could they possibly know that?

DH tells me not to expend energy on the what ifs and to concentrate on dealing with DS's problems now.

oodlesofdoodles - I only realised he had Aspergers when he was 8 - but only because I'd never heard of it until then.

It took a year to get a dx, and we started therapy just a few weeks before we got the final dx.

It's taken 2 1/2 years of therapy to get him where he is now. Head boy. Friends. Top of the school academically. He should come off the SEN register in Jan..........

DH agrees with you guys. That his ASD was caused by his vision problems, rather than them both being caused by the same thing.

I think it was a contributing factor but not the cause :)

I agree we can't change the past only contribute towards the future, bit I'm certain DS could have had it easier if someone had been thinking about the whole picture.

oodles and indigo what therapies have you used or are you thinking of using?

MangoMonster These are the main therapies DS has done:

• Auditory Integration Training
• Retained Reflexes Therapy
• Osteopath
• GAPS diet

If your child has any stomach / bowel problems you really should look Into the GAPS diet.

If your child is very anxious you really should look into Retained Reflex Therapy.

And if your child is disturbed by loud noises you really should look into Auditory Integratin Training.

Thanks indigo, very helpful to know. Not sure they are applicable right now to DS but will bear them mind. [hsmile]

Mango we are at the very start of this process, so still feeling our way in the dark. My DS has terrible eye contact/body language awareness, no stims, is extremely verbal, but garbled/repetetive, poor fine motor and motor planning skills. Which all adds up to quite low self esteem, bad behaviour and reluctance to try things he might fail at.

What has helped enormously is:
ABA - partly the direct therapy, but possibly more the paradigm shift for us as parents in the way we relate to him. Where we have targeted particular behaviours or communication patterns it has made a difference. Not solved things 100%, but significant improvements.
Montessori nursery - he's only been there a few weeks, but what a difference already. The nursery are also receptive and open to the ABA consultant's suggestions.
It's hard to say that his improvements are 50% ABA and 50% nursery, but the two seem to be working well together.
So recently we've seen big improvements in language, joint attention and fine motor skills. Still way behind his peers, but better than he was.

We are about to start some retained reflex therapy Indigo.

Thanks oodles, we've just started ABA too and it's going well. There's a Montessori nursery near me so might investigate. How old is your dc?

I met with the neurologist today, who said she will help me make a complaint about DS's lack of ongoing assessment after hospital discharge. I feel better that someone else (in a position of influence) agrees with me. I'm trying not to go over the what ifs again and focus on DS's current progress.

He's 4.5, but I wish, wish, wish we had Montessori-ed him from 3.

Thanks oodles it might be a food option for us if he can't go to the preschool we want.

Now that I realise the extent of DS's problems I can't believe I let the cost of the nursery put me off. We wasted a year in a rubbish 'normal' nursery/pre-school.

I'm going to mention it to the eye surgeon next month... Not complain, just see what his thoughts are now we have a dx.

So complex isn't it! Just got to keep on top of things from now on, although I'm aware most people think I'm neurotic about DS. Wish I had been ...lol

Mango I've been mulling over my complaint for a long time and went through it all with a health advocacy (?) sort of person. It is very hard to complain against the people who saved my son's life. But DS didn't just see one consultant, he went through the system, so my complaint is more about the lack of procedure to make sure a vulnerable child didn't fall through the net.
It's a hard one. If you work really hard and spend loads of money on private therapists and your son turns out okay, the consultant can say, 'see I told you depriving him of sight wouldn't be a problem'. (I really hope things do work out well for him.)

Anyway, yes don't let some random mnetter affect how you approach the consultant.

oodles sorry, didn't mean to offend you, we are in different situations. I guess I don't feel like I have enough proof to complain... Maybe I'm wrong. It's not that I think you shouldnt be complaining, so sorry if that's how it sounded... That wasnt my intention. It wasn't a judgement on you, just a 'think out loud' of what I'm going to do next and take it from there.

Gosh Mango I'm not offended at all. I was trying to say that the decision to complain isn't one to take lightly. My own garbled language problems!

Sorry stupid misunderstanding. That's why online forums can be tricky! Lol. Glad you're not offended :)