Blog: when an autism diagnosis was only the beginning: a parent’s perspective

When my son was diagnosed as autistic, I felt relieved - but also apprehensive. I worried about what the diagnosis would mean to him and how he would react. By then, he was already extremely anxious and exhausted from years of masking at school.

The diagnosis gave us an explanation for so many things, but it didn't magically make life easier. In fact, the post-diagnostic journey brought some of our biggest challenges.

As expectations increased, my son became increasingly overwhelmed. Anxiety grew, school became harder and eventually he developed entrenched emotionally based school non-attendance (EBSA). At one point, it felt as though he had simply run out of capacity.
 

What I have learnt since my son’s autism diagnosis  

What we have learned is that diagnosis is not an answer - it is a starting point. Knowledge is power. Learning about autism, anxiety, masking and EBSA helped us understand him differently and focus on what he needed, rather than why he couldn't manage what other children could.

I've also learned that, as parents, we are the experts on our own children and often their best advocates. Professionals bring valuable expertise, but they may only see one part of the picture. I've learned that it is my job to help bring together the whole, holistic picture – understanding the past, recognising patterns and sharing what I know about my child - so that everyone can better support his future and achieve the best possible outcomes.

If something doesn't feel right, flag it. You know your child. Your concerns are important.

We also discovered supportive communities where other parents understood. Finding your people can make an enormous difference. You don't have to work everything out alone.

Learn what is right for your child and your family. Ask questions. Ask for help. Ask for understanding. And keep asking when you don't get it!
 

What progress means for us  

For my son, progress hasn't always meant attendance or academic achievement. Sometimes it has meant leaving the house, building trust with an adult, recognising his own needs or managing something that previously felt impossible.

He is still learning self-compassion, as are we as his support network. We are learning to celebrate capacity rather than compliance, connection rather than attendance, and small steps rather than where we think he “should” be.
 

There’s no magic fix – but there is hope

There is no neat ending or magic fix. But there is hope. We understand our son better now, he understands himself better, and together we are learning what helps him thrive.

My advice to other parents? Learn, find your people, trust what you know about your child, flag your concerns and don't be afraid to advocate. Knowledge is power – and you don't have to do it alone.
 

About the author

This blog was written by a parent to an autistic young person.