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Questions to a mum whose twins have autism

13th February 2018 

Miriam Gwynne

Even before birth my twins were very different from one another. At birth one weighed a healthy 6lb 1oz while the other was just a tiny 4lb 11oz. One was alert, took to breastfeeding straight away and never wanted to be put down, while the other was sleepy, struggled to latch on and settled far better when left alone.

Nine years later and very little has changed.

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

People are always asking me questions so I thought I would answer a few of the most common ones. 

When did you first notice anything was different 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 nine! Isaac had a very noticeable eye squint and was not even trying to speak at 18 months so my health visitor referred them both to a community paediatrician. 

Naomi also struggled with weaning and neither of them would look me in the eye. They had no interest in other children and Isaac just mouthed everything instead of playing. Neither of them coped if our routine changed even slightly. 

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

I thought they may be delayed in some areas because they were twins and had to share my time right from day one. I also thought Naomi may have some physical issues as she seemed very weak and was not even able to roll over. I was fairly confident they would outgrow these things though and be totally fine. Of course I was naive and rather ignorant, but aren’t we all sometimes? 

As time went on I began to suspect something more was going on, with Isaac especially. He was very withdrawn, never played with toys, still had no language and at three he was still not walking. I started searching online and soon came across the word 'autism' but I was not ready to face it or even research it more at that time. 

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

At our first paediatrician appointment when the twins were just 21 months we were told Isaac presented with autism spectrum disorder and I assumed (wrongly) 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 the day he was formally diagnosed, even though in my heart I already knew. 

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 better eye contact as she grew older. Once she began nursery though things changed. Nursery staff noticed she was struggling in the social environment and showed no interest in other children. This triggered 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 diagnosed too?

As it came closer to starting school my concerns about Naomi became greater. I 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. They also noticed her speech had a lot of ‘echolalia’ (a term used by psychiatrists for “meaningless repetition of another person’s speech”). 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 of your twins have autism?

Most people find it hard to believe. On one hand I have a non-verbal son who has no social awareness, who constantly has to have pressure, flaps non stop and makes a lot of repetitive noises, loves lifts and hand dryers and has significant learning difficulties whilst his sister is thriving at mainstream school, can talk all day long (although only to us, not to anyone else), 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 autism does not define 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 help 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. 

Naomi even made headline news last year when she wrote to the council asking why our newly-refurbished park had no swing suitable for her brother. She cares for and defends him always. 

They walked at different times, often slept at different times, go to different schools and have different interests so the fact they were diagnosed with the same condition 14 months apart just adds to their beauty and uniqueness. I would not have them any other way. 

They are my world and always will be. We have challenging days but we have days full of laughter too. I really am doubly blessed in every way. 

Thank you to Miriam Gwynne for allowing us to share her blog on our page.

Read more from the Tamba blog here.

 





 

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