Anna Kennedy Online – Autism Awareness Charity

A Mother’s Journey

From the moment of my daughter’s birth, I was backwards and forwards seeing doctors and specialists due to her various stomach issues. One specialist told me that she was ‘spoilt’!

This resulted in her having to go through a colonoscopy when she was 3 years old. Thankfully, it showed nothing and while a dairy intolerance was diagnosed it was a mystery why it did not flair up on holidays and school breaks.

Alongside the stomach pains my daughter had very disturbed sleep and night terrors which ended with her being monitored via a referral to the Evelina sleep clinic.

The monitoring proved inconclusive, aside from the fact that it picked up brain activity explained by the clinic as dolphin like – dolphin’s brains never completely switch off or relax as they always need to be alert, meaning that my daughter was never completely rested even at night.

Reading over the notes again the report also identified on days when her routine was different her sleep pattern was even more disturbed.

I was starting to piece the puzzle together and thought we should explore ASD. However, the therapist we saw when she was eleven told us it was too early to diagnose, and we should wait until she was older. As I knew the waiting list is so long, I thought I would be proactive and ask my GP for a referral to CAHMS, a year later I had heard nothing and although assuming this would be normal, I did chase my GP, only to find that the referral had not even been sent.

During the covid lockdown my daughter’s behaviour was very difficult, I could not speak to her. My voice sent her insane. It grated on her as did my breathing. Home schooling was a disaster, I just had to leave her and hope for the best. It went against all my instincts. There was aggressive behaviour, aggressive language, screaming, and tantrums which I know now were extreme meltdowns and occasionally it became physical. 

As a mother it definitely was not my finest hour and I really struggled. My whole presence just upset her. In desperation we booked a private appointment with an autism specialist who I firmly believe saved my soul! She told me not to doubt myself as I was an experienced mother to another daughter with ASD, and to parent my daughter as if she had been diagnosed with ASD along with PDA (pathological demand avoidance.) With this in mind we began a new regime – days off school were allowed, I ignored swearing and meltdowns, did not push anything, and made no early morning plans – and finally my daughter’s behaviour settled.

In June 2019 we had our first zoom appointment with a nurse from CAHMS, a 90-minute chat with my daughter sitting next to me which she found unbearable. Although we both found this a really stressful experience a referral was agreed, and my daughter’s school and I began the endless filling in of forms.

Our next meeting was a year later, more questions, more forms, and although the school had highlighted no special areas, we were allowed to see a therapist who unfortunately then left.

We obtained a referral for ADOS, the Autism Diagnostic Observation Schedule, which is used in diagnosis and assessment of ASD, and waited another year for the assessment.

Finally, my daughter’s assessment was done on a Friday, calling back on the following Tuesday I had confirmation of ASD, a journey of just over 3 years for diagnosis within the CAHMS system.

Whilst every individual at CAHMS has seemed competent there seems no further help for ASD other than family therapy.

I want to say a special thank you to Carrie Grant who is involved with autism and was always at the end of an email with words of wisdom and a non-judgemental understanding that only another mother to children on the spectrum can relate to. Just writing this reminds me of the day I was sobbing after the experience of shopping for stationary with my daughter, not many people would understand why this would make me cry, but Carrie got it.

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