Understanding an autism diagnosis: an anonymous personal account
Withholding diagnosis from your child – why it’s a bad idea
By Anonymous contributor · Originally published 17 February 2016
Original article
The author of this post wishes to remain anonymous.
I’m of the firm opinion that it is a grave mistake to withhold a diagnosis. I’ve found that this can come in two forms – a parent avoiding the visit to the specialist doctor so their child can undergo testing, or going through with it and refusing to tell your child the results.
In my case, the first happened. The school counsellor had suspicions I was autistic when I began Year 7, and told my parents, who decided to keep this to themselves for the next 2.5 years. And so I was only told that I should consider getting a checkup at a psychiatrist mid Year 9.
The time from first suspicions to diagnosis was 24/7 misery. Everything that could have possibly gone wrong did. There was no part of my life I could look at and think was okay. I would run away to the local park frequently, and otherwise retreat to the internet, which became my safe space. I knew something was different, maybe wrong with me, and I didn’t know what it was. I just couldn’t connect and I couldn’t keep up. I felt broken.
In all likelihood, by the time someone with a disability works it out or is told their diagnosis, they will be hurt – by all the wasted years they were stuck, unable to work out a way to catch up with their peers, and not knowing themselves. It’s frustrating not knowing how your brain works – only knowing that it’s different. You can’t advocate for yourself until you know what you need.
If they’re anything like me, they’ll be very bitter. Very, very bitter. A lack of trust between parent and child may begin or expand after the withholding of such grave information. It’s a traumatic experience; finding out what was missed due to delay. Childhood and puberty is difficult enough without opening another cause for distrust. Your child probably knows they are different, but doesn’t know why. They just know that things are harder for them, and they’re being treated differently, and they may well sense there’s something they aren’t being told.
It took me till the end of second year uni to begin to be able to catch up to my peers career-wise, as I had developed a number of complexes which prevented me from doing anything, on top of the usual executive function problems autism causes. In an economic climate like this, it’s time you can’t afford to lose. Tell your child. They deserve to know.
Clickability editorial update: October 2026
Make space for questions about identity and support
Ask the practitioner how to explain the findings in language and a format your child can understand. Give them space to ask questions over time rather than treating the conversation as a single announcement. Include strengths, preferences and the practical help available.
The Autism CRC family guidance recommends explaining assessment findings and, where appropriate, involving the child. Listen to what they want to know. The anonymous account highlights the importance of being included; it does not require every family to use the same script or timetable.
Questions readers ask
Does this account describe every autistic child’s response?
No. It is one anonymous author’s lived experience and opinion.
Who can help explain an assessment to a child?
Ask the assessing practitioner about an explanation suited to the child and family. Official guidance
Find support that respects your child’s voice
Describe your family’s disability service needs through Clickability. Compare reviewed and rated providers and ask how they involve children in communication and decisions.
