Could Your Child’s Lack Of Eye Contact Be More Than Just Autism?

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My son has autism spectrum disorder. That no doubt explains a lot about the picture of him above. Lack of eye contact is considered a classic sign of autism and it was indeed one of the first signs picked up in Isaac from a very young age.

What wasn’t picked up was the fact his lack of eye contact was much MORE than just autism and in fact was due to something much more worrying: as well as being autistic my son is also visually impaired.

His autism was diagnosed at age 3 and yet it took until age 8 for professionals to realise how poor his eyesight is.

This angers me as had he not been displaying other signs of autism such as communication difficulties, social challenges and repetitive behaviours, health professionals would have actually looked at his eyesight much earlier.

At age 4 he was diagnosed with the genetic condition neurofibromatosis type 1. It is widely known that this can lead to eye sight problems yet still no-one seemed to take my concerns about my sons eyes seriously.

img_0217At age 2 he would sit like this and look closely at a cushion for hours. I told his paediatrician, I told our family doctor, I told our health visitor…everyone told me it was ‘sensory’ and probably due to his autism. I foolishly believed them.

A few years later I recall taking a video of him in the garden. He was walking up and down the bushes in the garden feeling them as he walked repetitively back and forth in a straight line. I showed that video to so many people. I knew something wasn’t right but all everyone said is ‘that is autism’, or ‘that is sensory’. My non verbal child was feeling the bushes because he could not see yet no-one noticed. That is heartbreaking.

img_0282I needed answers. We began attending an eye clinic where they were more concerned about training him to look at cards and spent years putting drops in his eyes. The specialist struggled because my child would meltdown and cry at every appointment so they just kept asking us to come back. Finally at age 6 he was given glasses…only 18 months later to find they were the complete opposite prescription to what he needed!

At age 7, after a huge fight, Isaac had an MRI and we received some concrete answers.

His lack of eye contact, his looking at items closely, his feeling of everything…was not JUST his autism…he actually had three separate and serious eye conditions.

My son DOES have autism. He also has Microphthalmia (small eye) and persistent hyper-plastic primary vitreous (PHPV) leading to loss of sight on his right eye and his left eye has an optic glioma (tumour) on his optic nerve!

What is the point of me saying all this? I am NOT out for sympathy. That does not help my child in any way. What I want this post to do is to make people aware that when professionals say ‘that is just autism’ it may NOT be. When it comes to poor eye contact autism is one of the first things professionals look at. But is is NOT the only reason a child may have poor eye contact.

Be aware. It may not be easy to do but despite the challenges it is worth getting your child’s eyesight tested.

Your child’s lack of eye contact could well just be caused by autism but it is always best to know for definite.

I wish we had realised that sooner.

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I am determined this is going to be positive

Sometimes major breakthroughs in one area come with challenges in another area. This has been so true for us this week as one child has made a huge leap whist at the same time we have had to come to terms with yet another diagnosis for the other one. But whatever both children face I am determined to stay positive. They are both so young and we have the support of some great professionals and a great school for Isaac that I have every reason to be positive.

So I will start with the new diagnosis.

Isaac has always had a eye squint. He was born with it. All my family wear glasses and all my husbands family wear glasses too, so the kid had little chance of avoiding some sort of minor eye issues. Saying that, so far his twin sister has passed every eye test and has no trace of a squint so perhaps his squint could have self corrected given time.

Unfortunately his squint has been getting worse as he has aged. He has, and still does, attend the hospital eye clinic regularly. Then came his diagnosis of neurofibromatosis type 1 in Decemeber and more frequent visits to the dreaded eye clinic, more drops to be administered and more lights shone in his eyes. Neurofibromatosis is a tumour condition that can cause eye problems as tumours form on the back of the eyes. It has always been difficult to fully test Isaac’s eyes as he only focusses on the things he chooses to and so looking at boring pics of grey trains and houses was never high on his agenda. And his learning difficulties and global delay and inability to speak makes conventional testing inappropriate.

Back in mid March I mentioned in my blog ‘Sometimes I cry’ that specialists were now thinking Isaac only had vision in his left eye. One of those gorgeous brown eyes had not formed properly at birth and extensive retinal scarring meant that his vision was affected. Sometimes you could see only one eye was focussing but other times it was yet another ‘invisable’ disability.
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This week we had a home visit by a vision impairment pupil support specialist. Now that Isaac is in full time education this specialist wanted to visit and talk to us about anything we could do at home or the school could do to support Isaac. Through detailed information from Isaac’s eye doctor, information from his nursery and from looking at home photos and videos of Isaac he was able to confirm what we had been hoping to avoid. In addition to having classic autism, neurofibromatosis type 1, global developmental delay, severe learning difficulties, pica and seizures our son also has a vision impairment. What a lot for a 4 year old to deal with! I was sad, I was heartbroken for my baby and frightened of what the future holds but I am determined this is going to be positive. My God can turn any negative to a positive.

Here are the positives:
He is right at the beginning of his education so full support can be put in place now.
He is still non verbal and his speech and language therapist was about to introduce pecs (picture exchange communication). We can now ensure the size and colour of pics helps him see these as well as possible.
His disability money has recently been reviewed and his award given indefinately so informing them of this new diagnosis would simply be a phone call rather than a re-submitting of pages and pages of forms.
His left eye shows great vision so he will not require glasses at present (which is fantastic as these would only get chewed and eaten!)
We now have a further explanation of why he likes to walk up and down beside bushes and walls. He has remarkably developed his own coping stategies by using these large visual markers to support his vision. This boy is inspiring!

Here is my beautiful brown eyed boy enjoying exploring his space blanket this weekend:
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And his vision seems to make a remarkable recovery when food is involved. Yesterday I had to leave my soup for a minute to deal with his twin sister who was lying on the sofa unwell. By the time I returned to the kitchen a minute or so later here was Isaac helping himslelf to my lunch!
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His first tooth fell out this week too. In true Isaac form…he ate it! I’m sure it would be a good form of calciun and it is certainly not the worst thing he has ever eaten I can assure you.

And now for something even more positive. Something remarkable. Naomi came home from nursery last week and told us the name of a friend! This girl has never spoken in nursery, although she has been going for two and a half years now. She is selective mute and has social anxiety and is on the autistic spectrum too. She tells us about everyone in nursery (staff and children) by describing what they are wearing, so to finally know a child’s name is such an answer to prayer. This little boy is in her group at nursery and she even said she plays with him! I thought I would push her further and ask ‘have you spoken to him?’ If you count a whisper then we have major progress indeed! My sweet little girl then asked me if we could write Ewan a letter and ask him to come and play with her.

So mummy wrote a little letter to a family she has never met inviting a strangers child to come for a play date. And this mummy was as excited as her daughter when Ewan’s mummy called to set up thier little date. I can’t wait to tell you all how it goes. However anxious or nervous my daughter feels on the day I am determined this is going to be positive. We will do a run to the house first, we will talk about what will happen and we will read stories about playing with other children and going to other people’s houses. And the nursery will support them both and encourage the friendship too. A first ever friend to play with.

Whatever else this coming week brings we have this to look forward to and whatever else we face I know I always have my family and my God.
And a determination next week is going to be positive as well.
Here is my wonderful daughter playing a boys game ready for her first ever play date:
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