'What everyone's missing in the Hugh Van Cuylenburg story, as an autistic mum to autistic kids.'

"The pain of being a parent of an autistic child is not the child, it's the world."

You'd be hard-pressed to find a parent — or really just a living person in Australia for that matter — who hasn't watched the now-viral video of The Imperfects podcast host Hugh Van Cuylenburg speaking about his child's autism diagnosis and saying those powerful words.

In his emotional speech, Van Cuylenburg was brutally honest about the grief and struggles he has experienced in the three years since his child's diagnosis.

And the response has been decidedly mixed.

For Sydney woman, Dr Siobhan Lamb, the words hit very close to home.

Not only is she autistic herself, but she is the parent to neurodivergent children and works as an educator with neurodiverse families at Developmental Paediatrics. She has sat in everyone's chair: as the parent, child and teacher.

"(Hugh) spoke so eloquently about the duality of the hardships he's facing, yet the hope that he feels," Dr Lamb told Mamamia.

"His message is one that has resonated with me more than any others in his ability to really express both light and dark simultaneously."

But the mother-of-three also understands the impassioned pushback that has come from the autistic community.

Watch: Hugh Van Cuylenburg's Open Letter. Post continues below.

"As a member and admin of Facebook pages for autistics and their families, responses to Hugh's letter have been completely divided down the middle. You have the autistic community saying, 'This is not neuro-affirming.' And then you have the parent community saying, 'I feel heard'," she told Mamamia.

One of the main points people made was that they believed Hugh's message was framed in a negative way.

"It was definitely made for parents, not for children, but he stated that from the very beginning," she explained.

"His message to me was very much, 'It's the world that's at fault'. It's just that he mixed that up with 'the world doesn't slow down enough for them'. Now, if you meet me, my thinking processes are faster than most people, and so that's something the Autistic community took umbrage with. Our thinking processes are not slow. Our social skills are not worse. It's that we just relate on a different playing field than neurotypical people."

Dr Lamb said what people have forgotten is the importance of supporting parents who are vulnerable enough to share their struggles.

"I'm autistic, and as an autistic community, we really need to listen to each other. The double empathy problem is at play if we want to help parents with autistic kids, we need the parents to not be scared to come forward," she told Mamamia.

"Hugh was so emotional and so real and so heartfelt. That's the sort of parent we need to support. You need to support them at the point they are at, not the point you think they should be at."

Because, as Hugh said, it can be people's perceptions of your child that hurt the most.

"I remember when my son was very little, it's crystal clear in my head, I had a person call the police on me," Dr Lamb shared.

"And I remember walking out of the shopping centre with people saying, 'You're a terrible mother. You shouldn't have children'. The shame and guilt and embarrassment you feel. I remember the tears streaming down my face and the only thing that helped me was a parent of another disabled child who was much older than my disabled child, walked over to the police and said, 'I know this mother. I know this child'. And she stepped in.

"And I think parents need to know that everyone that has gone through this feels this… and so it's only parents that have been down the path but are further along, helping the parents at the beginning that gets everyone, including myself, down the road."

Her wish is for a society that doesn't see a diagnosis as a negative.

"When my children were diagnosed, there was no grief, there was no shame, there was no 'Should we tell the family?' It was, 'That makes complete sense'. The other thing is, there's no negative narrative in our house. Both my husband and I are very successful at what we do. My kids look at me and say, 'Well, you're autistic and you're successful being autistic, I'm still going to be whatever I want to be'. It's more a full belief that this didn't rock my world," she explained.

"I understand as parents, things are hard, and I understand when you open Google and you go down this rabbit hole that you can feel judged by the adult autistic community.

"But the adult autistics aren't trying to judge you. They are trying to help. It's just that harm was done to them, and so they are trying to stop harm being done to younger versions of themselves. So it's not malicious, it's not nasty in any way. They're really trying to support your child."

Her advice is compassionate and practical: "I say this to parents all the time, get rid of your 'shoulds' and your shame. We are where we are when we're there. Just embrace that, because you cannot move forward unless you embrace where you are."

Feature image: Supplied/The Imperfects podcast.