Keratoconus and Learning Disabilities

[Anne Klepacz]

Thanks Leigh. I'd forgotten this was available online (I have the print version). And welcome to the forum. Great to see you here!
Anne

[Carole Rutherford]

My son is 18 years old and has Aspergers Syndrome a form of autism but he does not have Learning Difficulties - well not as they are accepted. His AS impacts on every area of his life. He is waiting to be fitted with lenses at the moment and I am very worried that because of his sensory issues he will be unable to wear them. I have tried to get this over to the hospital but they continue to look at me as if I am stupid. David is very verbal but has a serious communication disorder and I act as his mouth piece, at his request. His eye sight is getting much worse and the hospital think that he may be getting keratoconus ib his left eye now. I am a very worrierd Mum at the moment. As if the autism was not enough for him to contend with now this.

Carole

[jayuk]

Carole

What is the hospitals response when you mention this? Do you have a single point of contact or do you mention it each time you go to different people?

J

[Andrew MacLean]

Carole

You have come up against the problem of a poorly understood Autistic Spectrum. I guess this isn't the first time, and I am afraid that it may not be the last.

Your son is fortunate to have an articulate mother who will be his advocate. You really have to stick with it. go with him to see the ophthalmologist when his appointment comes round. Explain that your son has Asbergers, and spell out that this places him towards the "normal' end of the Autistic spectrum, but that it does leave him with some difficulties.

Ask questions on his behalf about keratoconus, and the way in which it is likely to imact on his life. Keep asking until you have understood fully what is being said, then offer back your understanding of what was said and the ophtlalmologist will either say 'that's right' or expalin again.

I am afraid I am a bit out of touch with these things; is Asbergers graded? If so you might like to specify for the ophthalmologist exactly where your son comes.

In the meantime, keep posting here if there is anything you do not understand or want to have explained. We can all share our experience. And, thank you. Your post may be a great encouragement to others in the same position.

Yours aye

Andrew

[Carole Rutherford]

I don't mind being David's advocat although the Consultant continues to talk at David and ignore me. David has told him that he actually prefers me to do the talking. It's not that he can't but when under pressure - and he does find this difficult - he does not always have the ability to take in what is said at once and then answer back. The guy continues to correct David when he says something that he feels is incorrect. EG. David was asked if he had any allergies? He has lots of them sadly. One being certain antibiotics David went into this by going though everyone he has ever taken - this is an ASD thing going into detail. The guy stopped him and said that there was simply no need for all of that and that in future he was just to give the name of the group of antibiotic. His response was like hitting David in the face with a wet fish. That is why David prefers me to do the talking because he hates to get it wrong. David could actually tell you the composition of the antibiotics and so on and so forth it's what he does.

And although I don't mind being his advocat I do mind talking about him as if he was stupid, which is what tends to happen. David could buy and sell most of the people on the planet with brain cells but he does have a serious communication and socalisation disorder.

So far I have bitten my tounge but I fear that I will eventually not be able to do so. For David's sake I know that I need to keep a lid on my feelings here so I wil continue to try.

I also have to be careful about the questions I ask as David does not handle negatives very well at all and I usually have to find a way to get round that. He also takes things literally so when he was told that he must never rub his eye again or he could damage it forever he is frantic if his eye is itching or sore and he can't find the drops or the drops do not work. You have to be very careful how you phrase things because of this.
Carole

[Prue B]

There is a little boy in my sons class with AS, he is in grade prep. The school is really trying to work with the family. As far as I am concerned that is the way it should be. Apparently his preschool experience was a nightmare. He was naughty and the teacher refused him birthday cake and would have him sent home. She did not see he had a problem he was a naughty boy. I hjave no experience and saw this kid backchatting his teachers and cursing etc, I immediatly thought there is something wrong here this child has a real problem. I actually thought maybe AS but was not sure. It angered me that I could see it was not normal misbehavior in 2 minutes and in 2 terms a preschool teacher could not. I feel for you and your family.
Would it be possible for a medical person who looks after your son to write to the consultant explaining you are his advocate and your son finds it hard to ask and answer questions especially in new and/or stressful situations? Drs dont always listen to their patients, but usually listen to their collegues. Maybe your GP or a specialist you see for tht AS whom you have developed a good understanding with would write a letter for you.