Autism and Nystagmus

[James]

I've been asked to provide some information about a new study that is being conducted by Leicester University regarding Autism and Nystagmus - they are seeking suitable candidates to participate in their research. Have a read and contact them for more information about what it will involve...

Autism and Nystagmus

At the University of Leicester we have found that several patients with nystagmus are autistic.

Autistic spectrum disorder (ASD) describes a group of disorders, including autism and Asperger syndrome. The causes of ASD are still unknown, and research is ongoing. However, research suggests that genetic factors may be involved.

Recent research suggests that around 1 in 100 people have ASD in the UK. It is thought to affect four times as many males than females, although the reason for this is unknown.

We are undertaking a study to look into the type of nystagmus and genetics in patients diagnosed to have ASD. We would like to ask people including children who have been diagnosed to have ASD and also have nystagmus to contact us if they are willing to participate in this research.

Contact Details:
Prof Irene Gottlob, Mr Anil Kumar
Ophthalmology Group
University of Leicester
Tel: +44 (0)116 258 6291

[tony dunn]

I wonder why they think autism can be connected with nystagmus.

[James]

This might be covered at the research workshop, that the Nystagmus Network are holding, in September! I will try to remember to asked if it isn't mentioned, but some prompting nearer the time would be appreciated!

[William]

Sounds interesting, I wonder what the correlation is here.

[KateL]

Perhaps there is a likely genetic link as both ASDs and CN are found dominantly in males?
There is no history of nystagmus in my family, however my brother has Aspergers and it looks like Michael has a lesser case as well.
James if you could ask about this I would be very interested. We can't partake in the trials as we don't qualify, but I am VERY interested as to what comes out of this!
Cheers,
Kate.

[1wife3daughters]

Hi, my 8 year old daughter has congenital idiopathic nystagmus and has recently been diagnosed autistic , do you have any further info regarding a connection between the 2 conditions , many thanks Richard.

[1girl1boy]

Hello. New to the Forum but not the NNetwork. Our 3 year old son has congenital idiopathic nystagmus (vertical see-saw) and just this week was diagnoised with ASD. We would be extremely interested in this research. The information we learnt from the Nystagmus Open Day last year made us realise that other very young children displayed similar behaviour as our son and so we attributed much unusual behaviour down to vision. i.e. lying on the ground playing with trains/cars, being scared at sudden noise, not always making eye contact when engaged in play and talking to someone. However, despite being a very social, friendly little boy, there is a lack of understanding language, as well as S&L delay (jargon and echolalia). What we are concerned with, is that has his visual behaviour been misinterpreted? Much of this behaviour is also displayed by children with ASD. Has enough time elapsed to be absolutely sure? Or might is be some other diagnosis? We have lost confidence in 'professionals' (Consultant Paediatrician) as originally they interpreted our son's abnormal head posture to behaviour and we knew conclusively this to be due to nystagmus, as did his Consultant Ophthalmologist. We would be extremely grateful for any up-to-date research or similar experiences.

[Sofie]

not always making eye contact when engaged in play and talking to someone.

This also a problem for me. I know that the person can see my eyes wobble and I don't like it! However, it is possible (it's genetic on my dads' side of the family) that I do have ASD.

[Lou]

The eye contact thing confuses me because my wobble is not very noticeable, no one has ever mentioned it and I think my mum's the only one who really notices it. I've never really seen it as a problem, but I still don't like making eye contact. I do when I force myself, but it's hard. I don't really feel self-conscious about it, so I don't know why I hate making eye contact... maybe I am self-conscious and I don't realise!

[Sofie]

Lou_ i hate making eye contact too. Apparently, you can't see my eyes move. I do have a relative who hates making eye contact too. However, her eyes are black. (no iris or the white bit; just black)

This is something I'm really interested in. I was asked last week by a complete stranger (well, friend of a friend; but I don't know her) if I have Autism. Apparently, as someone with a sibling with it, there is a high chance I have it too. It's not the only time it's been suggested that I have it, either.

[Lou]

I'm very shy as well which doesn't help!

[tony dunn]

My mum thinks I have autism because I don"t always understand peoples answers to things reactions etc. ie their sense of humour may seem strange to me yet other ppl. understand it.

[adam_13_cato]

My mum has always said that I have ASD tendencies... I did Simon Baron-Cohen's AQ test and scored 43/50 - very high end ASD =)

[adam26]

just done that test and scored 24

[BonnieBarnes]

My son Evan was diagnosed earlier this year with Aspergers which is on the high functioning side of Autism. He is exceptionally bright but struggles socially and gets frustrated very easily. He is attending group therapy to help his socialisation skills. We are encouraging his eye contact as this is also a problem for people with Aspergers.

It was hard finding out that he had Aspergers on top of his Nystagmus but at least we can now give him the right kind of help!