Why Being Honest About Progress Can Feel Risky

I’ve been helping a friend recently with their child’s EHC plan, and I’d forgotten just how disheartening that process can be. It’s exhausting, confusing, and far too often leaves parents feeling like they’re walking a tightrope.

One of the hardest parts? The fear that if you’re too positive about your child, any progress—no matter how small—might be used as a reason to remove support.

This fear seems especially present for children with autism or ADHD. These are conditions that can be deeply misunderstood, and unlike some others, they don’t always come with neat, measurable test results. When there’s no concrete evidence, support can feel even more fragile.

I remember this all too well with my own son. He has several diagnoses, but for a long time, the most serious—an acquired brain injury—wasn’t recognised. Because of this, his needs were often questioned. He didn’t tick the right boxes. At times, his presentation was seen as unbelievable.

That changed when we finally saw an incredible consultant who identified the missing pieces. He was 16 by then. Same child, same needs—but now, with different labels, the support was suddenly there. Professionals listened more. I noticed the phrase “mum says” appeared less and less in reports. It was frustrating to see how much difference a “recognised” diagnosis made.

I’ve seen this pattern again and again. If your child’s diagnosis is based on what’s seen as “concrete evidence,” there’s often less fear around being honest about progress. But for conditions based on lived experience or behaviour, parents are put in an impossible position—celebrate progress, or protect support?

Just this week, a friend told me about her own experience. She has a history of mental health challenges along with autism and ADHD. She was denied PIP last year because she said she now manages to go to the shops once a month—something she could never do before owning a car. That small but powerful piece of progress was used to remove the support that made it possible.

Thankfully, she had an amazing support network and took her case to tribunal. The judge and medical expert ruled that her ability to get out was a result of having support, not a sign that her conditions had gone away. But what a shame that she had to fight so hard for that to be recognised.

This whole experience reminded me just how broken the system still is. It shouldn't be dangerous to talk about the good days. We shouldn't have to prove why progress happened just to hold onto the help we need.

Maybe the key, for now, is this: when we talk about progress, explain how and why it happened. Did support make it possible? Was a tool, strategy, or safe environment the reason?

But most importantly—no matter what goes on paper, don’t stop celebrating your child’s achievements. They deserve every bit of that recognition, even if the system can’t always see it clearly.

#SupportParadox #EHCPJourney #CelebrateProgress #NeurodivergentVoices #AutismAndADHD #ParentingWithPurpose #Autability