AS and sensory impairment

[curra]

Hi,

 

Is anyone AS and has also a sensory impairment such a loss of sight in one eye, or loss of hearing in one ear? How does it affect you or your child? My DS has no sight in one eye from birth and I've always been told by professionals that it has no relevance as he can see well with his other eye. But now I'm not so sure While other AS kids manage some independence at his age, M can do very little for himself and has no interest in being in groups. I tend to think that both conditions make things more difficult and should be assessed that way. What do you think?

 

Curra

[Diamondmask]

Hi,

 

Is anyone AS and has also a sensory impairment such a loss of sight in one eye, or loss of hearing in one ear? How does it affect you or your child? My DS has no sight in one eye from birth and I've always been told by professionals that it has no relevance as he can see well with his other eye. But now I'm not so sure While other AS kids manage some independence at his age, M can do very little for himself and has no interest in being in groups. I tend to think that both conditions make things more difficult and should be assessed that way. What do you think?

 

Curra

 

 

Hi Curra,

 

My daughter is autistic and is blind in one eye with low vision in her other eye. We didnt know she was vitually blind until she was nearly 3. She had a vision test as part of her multi diciplinary assessment for her autism dx. She copes with it ok, but then thats all she has known, she doesnt know any different and its only recently that her speech has started to improve so she couldnt tell us. She can distinguish shapes and colours with her good eye so she manages and she has REALLY strong glasses for that eye which help. The biggest problem we have is with her constantly breaking her glasses, they last a matter of days! ASDA optitions really LOVE us LOL! The other problem we have is with the VI team from the LEA, ARGHHHHHHHH! Trying to get large print and low vision items out of them is like trying to get blood out of a stone, you think that ASD teams are bad!

 

But I agree that both conditions need taking into account. My daughter is classed as moderately autistic, mild cerebral palsy and low vision. Each of these conditions alone are managable, but put them together.................. Well you know what I mean.

 

HTH

Sarah

[curra]

Hi Sarah,

 

Thanks for your reply!

My son's loss of vision was diagnosed when he was 4 and he was checked every year until he was 10, then he was diagnosed as AS, but he never had a multidisciplinary assessment. He is very clumsy and insecure when climbing stairs, crossing a road or just walking on the street because he bumps into people. I think that his lack of vision in one eye has also contributed to his social isolation. What kind of eye tests did your daughter have during the multidisciplinary assessment?

Im sorry that you have to fight the LEA to get large print for her. It's pretty obvious that she needs that help, isn't it?

 

My son has also broken so many glasses that Specsavers already know me and the reason why I'm there again and again !! He's only slightly shortsighted in his good eye, but he constantly complains that he doesn't see well.

 

 

CurraXX

[Ian Jordan]

A standard eye exam is limited in cases of autism

 

Please get a visual processing/auditory processing assessment (will take 1-2hrs after the eye test)- dificult to find someone with adequate knowledge levels but it can make a massive difference.

 

Sometimes it is possible to restore hearing / vision!

[curra]

Thanks, Ian

 

All your information has been very useful. <'>

 

I have sent you a PM.

Curra

[Diamondmask]

Hi Sarah,

 

Thanks for your reply!

My son's loss of vision was diagnosed when he was 4 and he was checked every year until he was 10, then he was diagnosed as AS, but he never had a multidisciplinary assessment. He is very clumsy and insecure when climbing stairs, crossing a road or just walking on the street because he bumps into people. I think that his lack of vision in one eye has also contributed to his social isolation. What kind of eye tests did your daughter have during the multidisciplinary assessment?

Im sorry that you have to fight the LEA to get large print for her. It's pretty obvious that she needs that help, isn't it?

 

My son has also broken so many glasses that Specsavers already know me and the reason why I'm there again and again !! He's only slightly shortsighted in his good eye, but he constantly complains that he doesn't see well.

CurraXX

 

 

Hi Curra,

 

The multidisciplinary assessment was done as she was being diagnosed for her autism. She saw SALT, Pead, OT, PT, Orthotics (she has Peidrot boots and ankle orthosis for her walking), ENT (she had her tonsils and adenoids out at 3 yrs for apnea), audiology, geneticist and eye tests. Pretty thorough really! She was going on for 3 years at the time, dx'd just after her 3rd birthday, the process took about a year. As for the eye tests, they took a while and had to be repeated several times as at the time she didnt have much speech, wasnt very compliant (still isnt!) and they wanted to be sure of her degree of visual impairment. She does have a problem with the development of her retinas, so just from looking in her eyes with a scope they could see there was a problem. Her full dx is autism, ADHD, Global development delay, cerebral palsy, separation anxiety disorder, pica, partially sighted, mixed hyper+hypotonia and SLD's. She has more letters after her name than the pead who dx'd her! Its probable that she has some chromasome abnormalities but we didnt want the tests, wont make any difference anyway. Her older brother is autistic too, though his *brand* of autism is different to hers.

 

If I remember right, her eye tests were a general identify shapes type of thing, 3D vision test thingy (sorry dont know the correct names), binocular vision test, visual field test and probably more, its been 3 years now so its hard to remember them all. They were all done on different days because she was so non compliant. The opthamologist and audiologist also had a look at her while she was under GA for her tonsils.

 

HTH

Sarah

[curra]

Hi Sarah,

 

Thanks for the info. There are several eye tests that you mention that I think my son should also have but have never been done. I realise that we were left to hang high and dry after his dx. I have fought for years to have him assessed by a pshysiotherapist and only now at the age of 13 he's going to have at last and orthotic assessment because he suffers from knee and feet pain, apart from not being able to keep balance. So now I'll fight to get a more comprehensive assessment of his vision in relation to his coordination and clumsiness. Ian Jordan has given me also great advice (he's an expert).

 

Best of luck to you and your little girl. Hope she's getting all the help she needs! <'>

 

Curra

[carrieq]

I work as a teacher of visually impaired. It is not often we are involved with children with monocular vision, in the authorities that I worked in, now based in special school. You seem to have concerns regarding mobility. You should be able to get access to a mobility officer either through RNIB or contact the sensory service direct and lay it on thick. If it is knocking his confidence and limiting his ability to get out and about then you are entitled to help even if he doesn't get seen by or is on the books of the VI team. A mobility officer would be able to look into the what and why and give help for how to overcome the mobility issues.

Hope you get it sorted

Carrie

[curra]

Thanks, Carrie <'>

 

Don't know if there's this type of help here. It seems to me that everything has to go through the SS channel or the GP The RNIB gave me a link to a support officer near my area, hopefully they can help.

 

CurraXX