Meet Claire

Hi Claire, please introduce yourself and your family.

Hi my name is Claire and I am a mum to twin boys who are now 17. Charlie, my eldest twin was born with kidney disease and has had a lot of trouble since then and he is also autistic. He also possibly has Tourettes, but it is very difficult to get that diagnosed in our area. He still asks me now for speech and language therapy as he struggles to form sentences and pick the right words sometimes.

Thinking back to early on, when did you realise something wasn't quite right?

When he was 6 months old he was hospitalised because of high blood pressure, as a consequence of that we ended up with an awful lot of other appointments, which we hadn't realised he needed. One of the appointments was with neurology and she (the doctor) said then, he is going to have trouble with his 'r' and something else although I have forgotten what it was. That was the first indication we had had that there was likely to be any problems in the future. As a mum, you just push that to the back of your mind. Because you think, well he isn't talking yet so it doesn't really matter. But as he and his brother started to get older, I began to notice there was a significant delay between his speech and that of his brother Harry's. Harry used to translate for Charlie. We thought maybe it was just a twin thing but I think at that point I knew deep down there was something not quite right. Charlie just babbled up until he was three or four years old. When he did speak it was quite difficult to understand him, and the awful thing was we use to have to ask Harry.

At this stage we were living in Mallorca and we asked the nursery teacher who said, he was fine, he's young, he'll grow out of it. When we came over to the UK when they were four and about to start reception, I was approached by the teacher on his first day and she said 'I think there might be something wrong with Charlie, what do you think? It was from there really that it all snowballed, there were all these interventions with paediatric doctors. One thing he was referred to was Speech and Language Therapy. It was great but I really wish he had had a lot more. He then had it again when he was about 9. It has been helpful, but I really wish there had been more of it.

Do you remember getting the diagnosis and how this felt at the time?

I don't remember there being a diagnosis just that they said he struggles with words and sentences. This is still the case and he struggles with 'th' words like the still now. At first the intervention was through the school doctor and the speech therapy was in school, so I wasn't present for the sessions, they were in school. I really wasn't aware of what was going on, which I suppose is a bit of a problem!

How did school cope with autism side of things?

The school were fantastic, I have to say. The only time I felt let down, and I still feel let down to this day is that he was never given a statement. Because he had no behavioural problems, he did at home but I think that is because I think when they come home, they can relax and release it all. But because he was fine in school I didn't get help to get him support in school. But other than that they were the ones to really understand and help me to get the autism diagnosis.

The autism diagnosis took 5 years. It wasn't because of the school, it was because when he was 5 the doctor said he had so many traits from other learning disabilities that he didn't want to label him with just one because it might restrict him getting the help. I understood this to some extent, but every other professional who has seen him thinks he at least has autism, everything else should come a long side it for example dyslexia.

At that time I lived in Cambridgeshire. It is interesting how things change as you cross borders of counties. I moved to lincolnshire with them when they were 7. When we came he we brought all the information here with us. The school put everything in place but the difficulty was getting a diagnosis from a paediatric doctor, who is suppose to know their stuff.

I am a bit of a best case scenario woman, so when I go to appointments I will say, oh yeah he is fine, even though I know he is not. I tend to portray an image that everything is hunky- dory even when it's not and that I am managing. On one occasion we went to see a paediatric doctor and Charlie was on top form that day, he was able to do whatever you asked him to do. the doctor said he didn't understand the reports, Charlie was fine, he didn't have autism. We went back another day, under different circumstances and I didn't coach him, but he wasn't on this planet. He was totally different. At the end of it, he said I see what you mean now, this is different.

I think there is a lack of understanding that children can have reasonable or good days but they are few and far between.

I will say that even though I knew from the age of 3 Charlie had autism I still broke my heart on the day he received an official diagnosis because it was like a sense of relief but it's also just heart breaking that you have this diagnosis for your child.

I would not swap Charlie for the world he is just so uniquely brilliant and just the loveliest human being!

Tell us about Charlie now

He has had a bit of a tough time lately to be honest. Some of that is adolescent but he has become more anxious as he has become more aware of who he is and the conditions he lives with.

He has struggled but things are getting better for him. t college and is managing, he does struggle but he is the most amazing artist. He loves to draw. He has always drawn since he was little and hasn't stopped. He does really well, but I do feel there is a lot more help he needs, it is just a case of finding it.

What have you worried about the most?

I think it is the communication side of things that has worried me. He is concerned about the fact that he doesn't understand people and that they don't understand him.

How have your family coped and how have they supported you?

They have been brilliant. At first they said 'he's fine, don't worry' but once they understood they were fully accepting. Problems come from those who don't know how so well, like at college or on the outside thinking he is different. I love the saying 'Different but not less' Family members agree with this and it is so true. Charlie is amazing and everyone loves him because he is so funny

What message would you send back to 3-year old Charlie's mum if you could?

For sure - not stop advocating for your son, you are going to come up against people who don't believe you or they can't see what you see. Just don't stop advocating for your child. A mother's instinct is a powerful thing and while we can be wrong, sometimes we're not, so stick to your guns and keep moving forward to get the help your child needs. Keep fighting for what you believe x

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