“She is confident, happy and reaching A-C grades. Her anxiety and burnouts have reduced because we manage them before it hits, and her speech has come on after having SALT [language therapy]

Name: Sophie
Age: 12-19
Location: UK

Sophie’s mum has written this account from her own perspective, as a neurodivergent mum. It is shown here with Sophie’s explicit, and proud, permission. Sophie hopes to co-write a book with her mum, about their experiences, in the future.

Sophie was diagnosed private at the age of 13 [still waiting for the NHS assessment, aged 15] after a 9 year battle with the NHS. She was first referred aged 5. She was also referred to speech and language who discharged her and said she would grow out of it. CAHMS [Child and Adolescent Mental Health Services] assessed Sophie aged 7. The assessment was awful. They seemed to blame our parenting, which made me furious. Sophie was observed for 20-40 minutes in school by CAHMS which I was never made aware of until I received a letter saying they would not be referring Sophie on as she was fine, she was sociable, happy and made eye contact (I could have screamed).

I always knew something was very wrong from the minute Sophie was born she couldn’t feed, she barely slept and we couldn’t cuddle her – a very unsettled baby and we were like robots for the first year of her life.

She did spend time in ICU after an emergency section, even then I wasn’t listened to after 8 previous miscarriages – she was a miracle and about to teach the most valuable lesson as a parent – always trust your instinct, professionals are not always right.

Sophie was a late walker at 18 months and never crawled but she was very smart, hitting all her other milestones. She wasn’t a fussy eater, until her teens, and she was active and very sociable, but by god she had my life. Every time we went shopping, or out for a meal, or did a family activity, it was carnage. Sophie could not focus or sit still, or stand in queues. She would be under clothes rails, spilling drinks, wandering off, climbing out her buggy, kicking shoes off, she felt like a devil child but now I know this was all sensory behaviour. At 18 months Sophie poo-smeared and I was told this was normal. I can remember thinking how the hell is this normal, my first child didn’t do this, I now know this was sensory-related.

Sophie was a very determined, active girl. She even gave me a social life – she did swimming lessons, karate, brownies, dance – she certainly kept me busy and, at that time, I was so exhausted with fighting the system – the school – to be heard, it was a lonely time. I remember her SENCO [Special Educational Needs Co-ordinator] saying I was an over-anxious mum. To this day, I have never forgiven that comment. People don’t realise the damage they do to families, and when your child masks it’s very hard to prove what you see. It’s the most frustrating journey ever.

I put in 3 more referrals to CAHMS, all of which were rejected. I gave up, I was broken. Until Sophie hit 11, everything changed. She changed in an instant, suddenly she wanted to drop all her activities and she withdrew from everyone, she wouldn’t eat or leave her room. I arranged for a community support worker to see her and within an hour she pulled me aside and said she thinks Sophie is autistic. I’ll never forget that moment and I cried like a baby. At last someone sees what I see. I will forever be in debt to this lady as she gave me that fire to fight again. It shows it only takes just 1 person to see it. Once Sophie started secondary she crashed harder – her meltdowns increased to daily, her sleep and not eating got worse. I could see my baby girl slipping away to a bad place. Luckily, lockdown happened – I believe this saved us as I was able to work with Sophie 24/7. I rung CYPS [Children & Young People Services] and basically told them if you don’t see my child now I will be reporting them to PALS [NHS Patient Advice and Liaison Service]. She was assessed and seen within weeks. Therapy was put in place and an occupational therapist. Luckily Sophie engaged and it helped. Once Sophie was back to school, I arranged meetings with SEN [Special Educational Needs], who really listened and supported us. She was put on an IEP [Individualised Education Plan] instantly. And we put in place things that would help – dinner pass / sensory breaks / no detentions / work broken down / planned seating with a friend in lessons etc. I never knew that a child could be put on SEN without a diagnosis. No one tells you these things.

CYPS told me they would fast track and she would be diagnosed the end of that year but they lied and changed it to 3 years. Sophie is still waiting and is 15 now. They told me diagnosis makes no difference – a comment that makes me so angry, I actually proved them wrong too.

We decided enough was enough, my mental health couldn’t take any more, my marriage was already broken, so we went private. Best thing we ever did.

Since Sophie has had the support in school since, we know how to navigate for her as we know what is wrong and, because Sophie knows why she is different, things have been amazing. Sophie has blossomed and matured and is the most determined young lady I’ve ever met. She is confident, happy and reaching A-C grades. Her anxiety and burnouts have reduced because we manage them before it hits, and her speech has come on after having SALT [Speech and Language Therapists] work with her.

As a mum all I can say is you know your child better than anybody on this earth. Follow your gut every time, reach out to other mums who understand and have been through it. Don’t invalidate your feelings, they matter, and be firm and strong – you are the only one that can navigate for your child.