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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My children have autism: I need therapy more than they do.


I remember the very first day I admitted to myself that my children were struggling. They were both 18 months old and neither of them were walking. One never gave eye contact not did he interact much and he had no language. The other could not crawl or roll or even pull herself up. Both relied on routine for everything!

 
I remember one Friday late afternoon making a call to my health visitor and leaving a tearful message on his answer phone.
Looking back that afternoon epitomises the entire point of this blog. Here was I in tears worried about my children while they were happy sitting on the couch watching TV.

 

They were happy…it was me who was sad.


As time went on and appointments started piling up for them both it became quickly apparent that I needed to do every bit as much as my children. Occupational therapists gave ME exercises to do with them, speech and language therapists sent ME on a course while the children were happy at home in their routine with babysitters. The paediatrician gave ME advice while only briefly examining my twins. Early intervention support relied on ME doing more with the children to ‘bring them on’. It felt clearly that I was to blame.

 

While my son scanned object after object across his eye line repetitively, happy doing his own thing, I was silently breaking my heart. When all the other children ran into nursery while my daughter needed carried in, I was the one who emotionally struggled.

 

When my non verbal, not toilet trained, highly delayed son started full time school years later he settled much quicker than I did. He assumed everyone would look after him while I knew otherwise. He had no awareness of the danger of getting into a taxi without mum (he hardly acknowledged who I was) nor any concept of what school was and just went with the flow. Meanwhile my anxiety rose to a whole new level knowing I was unable to know anything about his day, who he was with, what he had eaten or wether or not people were looking after my vulnerable baby.

 
I needed support to help me with that constant anxiety. 

 
When my son has extreme meltdowns lasting hours and he is unable to communicate why, that affects us both. The fact I now have an 8 year old who I still can not communicate with on any meaningful level has damaged me.

 
I need help to work through my feelings of failure. 

 
When I see other children riding bikes, playing with friends, going to dancing or any other of hundreds of ‘normal’ things both my children really struggle with my heart breaks.

 
I need people to understand that some times I need to mourn for the things my children will never achieve.

 
My body is carrying a heavy load. I am on full alert 24/7. I have professionals watching our every move, quick to point out if they feel my children’s struggles are down to my parenting. My mind is constantly alert thinking of our next appointment, the next thing I need to prepare my children for or the next person I need to chase up. After years that affects your body and your mind in ways you can not control.

 
I have had counselling and also have to take tablets to keep depression at bay. My thyroid is whacked and my blood pressure keeps rising. My adrenal glands are failing.

 
My doctors tell me to ‘rest’ but autism never rests. As a parent to two children with autism I can not afford to rest. There is no time off.

 
My children are generally happy. The world they live in is safe and predictable. I need to keep it that way to protect them. They need me. The reality is they always will.

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They are perfect the way they are. They don’t even see themselves as different. It is because I am NOT autistic that I see things differently. I see how they could be mistreated and abused. I see them struggling to get jobs. I see my son requiring support all his life and never living independently. I see their vulnerability. I see their lack of social understanding. I see their need for constant routine. I see their naivety.

 
They don’t need therapy to help them cope with any of that. But I do. 

What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?

When your child is diagnosed with autism and then dumped

img_6296When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’

It is incredibly common to hear that. But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.

IMG_2182My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were build up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosis children and dumping them.

This article first appeared here

When You Still Get Flashbacks To Diagnosis Day

img_0034Some days stay in your memory for a long time; the day you gave birth, your wedding day perhaps, or even the day you graduated from high school or university. Unfortunately for me one of the days that is stuck in my mind is the day my precious son was diagnosed with autism. I am not alone in that either.

I put it to the back of my head most days. I rarely read the report I was sent as it always brings me to tears. Time passes. My child grows and develops, but still some days I look at him and I am right back there in that waiting room when he was at just three years old waiting on his final assessment for a life long diagnosis. I knew before they said the words. I thought my heart and my mind were prepared. It turns out I was wrong.

I was utterly devastated to hear my son had autism.

People tell me I should not have felt like that. I have been told that he would pick up on my feelings and feel rejected, that autism is just a different way of processing things and that my son is still the wonderful boy he was before that day.

I still cried.

I cried for the child I thought I would have. I cried out of fear and worry. I cried at the thought my son would struggle more than I ever wanted him to. I cried that my instincts as a mother had been right all along. I cried not for my son..I cried for me.

Autism was something that would stay with my son all his life. That can be difficult to comprehend when your child is not even at school yet.

When he was diagnosed he was only just walking. He had no language and little awareness of the world around him. He didn’t know his own name. I had no idea if or when any of that would change. He was diagnosed and then we went home. No-one offered me hope.

It was a dark day.

I could take you to that building even now despite four years and five months having passed since we were there. I still see the waiting room in my mind, I can smell the sterilised toys and the wiped down plastic seats, I can hear the voice calling my sons name. It was like time stood still that day.

As my beautiful boy sat in yet another waiting room last week, on yet another plastic chair, I had a moment of flashback to diagnosis day again. Except this time I didn’t cry at the memory, it was more of a shadow in the background.

It has truthfully taken me many years to get to that point. Some days I hate even being referred to as ‘am autism mum’ as that just makes me think back to that defining day when they mentioned autism for the first time.

My son has autism. I can say that now.

Today I say that with pride and a smile. My son is still non verbal, still not potty trained and still requires round the clock care. He has no idea of what happened the day he was diagnosed and probably never will. That day in 2012 never affected him in any way, but it defined me as a parent.

Wether you have fought for the day for a long time, or came away from the appointment in total shock, diagnosis day is huge.

I know I am not the only parent who has taken years to process my sons diagnosis. I am not the only person to have flashbacks to the day they told me my son had a life long condition with no cure.

So what helped me the most to stop those flashbacks and memories from taking over? Hearing this brown eyes boys laugh, watching him smile and realising that he may have autism but autism in no way defines him.

We are doing ok. We are a team. I help him and he helps me too. He is replacing the memory of that day with better memories every single day of his life. I hope I get flashbacks to his hugs for many years to come.

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