Clare’s Story: Supporting Lily’s Autism Journey

(Names and images have been changed to protect anonymity).

Supporting Lily through her autism journey has taught me that with patience, understanding and the right support, our most challenging moments can become our greatest strengths.

My name is Clare, and I’d like to share the support I received from Autism West Midlands.

I first contacted Autism West Midlands for advice about my daughter, Lily, who was four at the time and awaiting an autism assessment. She was really struggling to attend school, and I felt unsure about what to do next.

Early support and understanding

At my first appointment, I was given clear guidance about the assessment process, including information on NICE guidelines for Lily’s age. I was also introduced to Ambitious About Autism’s “Right from the Start” toolkit, which helped me understand autism and reassured me that seeking early support was the right step.

I learned about internalised autism profiles, which helped me better understand Lily’s behaviours. Being informed about the different diagnostic tools also made the process feel much less daunting for both of us.

With long waiting times for assessment, I was also given information about reduced-cost private assessment options, so I could make an informed choice.

Practical tools that made a difference

Lily experiences significant sensory differences, so I was supported to complete a sensory profile to identify what affects her most, such as bright lights.

I was also introduced to concepts like sensory circuits and interoception, which were completely new to me. The Occupational Therapy videos I was given helped me understand how Lily experiences internal sensations like hunger and temperature.

This made a real difference. For example, Lily now recognises when she feels hungry and can communicate this by pointing to her tummy. Her mood swings have reduced, as she better understands what her body is telling her.

I was also signposted to local parent support groups and encouraged to register with Birmingham Carers Hub, helping me feel less alone.

Navigating challenges at school

At my second appointment, I shared concerns about Lily’s anxiety at school. She was panicking when asked questions, not eating, and avoiding the toilet, which led to frequent accidents and embarrassment.

I received advice on SEN support, including the school’s duty to use “best endeavours”, reasonable adjustments under the Equality Act 2010, and the Education, Health and Care (EHC) needs assessment process. I was also introduced to a tool to help identify the root causes of Lily’s anxiety.

Strengthening advocacy and support

At my final appointment, Amanda reviewed Lily’s SEN targets and explained that they were not appropriate or effective, as they lacked clear strategies. Together, we developed more realistic and meaningful targets tailored to Lily’s needs.

I was also introduced to the Autism Education Trust guidance, which helped me understand the reasonable adjustments I could request from school.

One of the biggest changes for me was understanding emotional regulation. Amanda helped me see that Lily’s behaviour is not “naughty” or disobedient, but a response to overwhelm. This completely changed how I support her, and it has strengthened our relationship.

Using a simple 3-point scale, Lily can now show me how she is feeling, so I can step in before things escalate.

Small changes, big impact

We also explored why Lily was struggling to use the toilet at school. Amanda suggested this could be sensory-related, including the height of the toilet. After requesting a step and support from a trusted adult, Lily’s accidents reduced significantly. This small adjustment has made a huge difference to her confidence.

The support offered to Clare is provided by Autism West Midlands, a charity that is working in partnership with Birmingham Carers Hub. Find out more about our Autism, ADHD and Learning Disabilities Support.