Additional Needs

Meet the Twins Diagnosed With the Same Condition 15 Months Apart

Posted by Miriam Gwynne on 4th August 2016 Additional Needs, Disabilities

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Their personalities and abilities are so widely different yet incredibly they are diagnosed with the same condition.

People often want to know more so when a friend recently asked me a few questions I decided to share my answers for others too.

When did you first notice anything was, 'wrong', with either of the children?

They were both late meeting key milestones like sitting, crawling and weight bearing.

In fact Naomi still can't crawl at seven!

Isaac had a very noticeable eye squint and was not even trying to speak so my health visitor referred them both to a community paediatrician.

Naomi also struggled with weaning and neither of them gave eye contact at that point.

Did you have any idea what could have been the problem?

I thought they may be delayed in some areas perhaps simply from being twins and having to share my time.

I also thought Naomi may have some physical issues as she seemed very weak and was not even rolling about.

I was fairly confident they would outgrow these things though and be totally fine.

As time went on I began to suspect something deeper was going on, with Isaac especially.

He was very withdrawn, never played with toys, still had no language and at two was still not walking. I started googling and soon came across the word 'autism' but I was not ready to face it.

Who first mentioned autism to you and how did you feel?

At our first paediatrician appointment we were told Isaac presented with autism spectrum disorder and I assumed this was a formal diagnosis.

I was quite shocked to find out later that this was not the case and that for almost two years afterwards professionals did everything possible to avoid the word, despite the fact it was obvious he had it.

It took until he was three years and nine months to get a formal diagnosis by which time he was very entrenched in his own world, still not speaking at all and spent his waking moments scanning objects in front of his eyes like his favourite blanket, his hands and anything he could reach.

He showed no response to his name and understood very little.

A piece of my heart broke that day.

How was Naomi doing at this time?

After needing a standing frame from physiotherapy Naomi finally started walking at two and a half.

Her speech was great and she showed much more interest in her environment.

She played with toys, knew letters and numbers and colours and was giving much better eye contact as she matured.

Once she began nursery though they began noticing she was struggling in the social environment and showed no interest in other children.

This started our first referral for her, although autism never really entered my head as she presented so differently to her twin brother.

How did Naomi end up being diagnosed too?

As it became closer to starting school our concerns about Naomi became greater.

We noticed she was not talking at all outside of the house, she was not playing with other children, she was very anxious all the time and she became very distressed at changes.

Her play was more repetitive and she was frequently lining up toys and just looking at them.

She was referred to the diagnosis team who picked up on all these things and they also noticed her speech had a lot of echolalia where she was taking sentences from tv shows and books and using these instead of her own language.

She was diagnosed as having autism spectrum condition a week before her fifth birthday.

How do people react when they find out both your twins have autism?

Most people find it so hard to believe.

On one hand I have a non-verbal son who has no social awareness, who sensory seeks constantly, loves lifts and hand dryers and has significant learning difficulties, whist his sister is thriving at mainstream school, can talk all day long, understands everything we say and to many people seems perfectly 'normal.'

It seems very strange to say they both have autism as they have very little in common.

They really do show how wide the spectrum is despite living in the same family and even being born on the same day!

Is there anything else you would want to say about your children?

Absolutely! They may have autism but that is not what defines them.

They have very unique characters and personalities and that does not change just because they have a diagnosis.

They actually help and support each other so much too. Naomi helps people understand when he brother can't speak or sign and Isaac's confidence and laughter helps Naomi overcome her anxiety as she relaxes being with him.

They have a wonderful bond and being autistic does not change that in any way.

They walked at different times, often slept at different times, go to different schools and have different interests so the fact they were diagnosed 15 months apart just adds to their beauty and uniqueness and I would not have them any other way.

I am double blessed.