The Problem With Parents who Make Their Child’s Neurodivergent Diagnosis About Them

TW: autism parents and parents acting like a disabled child means the death of a healthy child.

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Paddy and Christine McGuinness did an entire documentary on their children’s autism called Paddy and Christine McGuinness: Our Family and Autism. Yet they still haven’t told their eldest children that they’re autistic. Christine claims it’s because their children are happy with how they are, and she hasn’t found the right time to tell them yet.

However, I buy the second excuse the least. Paddy and Christine have time to talk to journalists and their adoring fans about their children’s autism experiences but not their children.  

I have seen this sort of behaviour from parents whose children have ADHD, autism, dyspraxia, Tourette’s, and other types of neurodivergence.  Since many of my social media followers are parents who are seeking guidance and hope for their child’s future, I wrote this article with so much fear in my heart. I feared my words would be misinterpreted as a personal attack on all parents who have faced mutual circumstances. That couldn’t be any more untrue. So, I feel like clarification is necessary.

I am calling out parents who are so self-centred that they treat the diagnosis like a tragic event and avoid making decisions about how best to support their child. The best way to explain the mindset of a parent pre-occupied by grief about their child’s diagnosis is a blog post by Eileen Lamb. Many #ActuallyAutistic advocates have criticized her for creating a platform where she exploits her son’s experiences with autism for-profit without his consent. On her blog, she uses the language of those who bully and stigmatize neurodivergent people:

“I’m grieving the naiveté that led me to believe that all moms get to hear their child purposefully call them mommy. Innocence tricked me into believing that all children cling to their parents.  I’m not grieving you, Charlie. I’m grieving my dreams.”

Paddy expressed similar concerns in the documentary. which features a scene where Paddy tells his viewers about his “worries” that his son may not understand his dad’s love for him. He asks his son if he loves his dad every night. Then his son responds, “yeah,” and acknowledges that his dad loves him. I don’t see anything wrong with that. I have told my parents I love them in a similar way before. His son is clearly expressing love, but not in a way that suits his dad’s worldview of what expressing love “should be.”

I have always known that I’m dyspraxic and neurodivergent, and I received a diagnosis at age 4. I always thought of it as a privilege to understand the motivations behind my behaviour.  I wasn’t always proud of my diagnosis, but I would never describe the lack of pride I once had as grieving. For such a long time, I dealt with people who were a lot like Paddy McGuiness and Eileen Lamb. 

My behaviour, life choices, and ways of expressing emotion didn’t reflect other peoples’ idea of normal and being myself made other people feel uncomfortable. Instead of listening to what I needed, far too many people reacted with a mixture of shame and indifference. My self-esteem took a massive hit because of it.  So, what can you do to prevent similar consequences? Writer Deborah Reber encourages parents to use language that supports not shames behaviour. Here’s her definition of what that can look like:

“You need to walk the fine line of addressing weak areas honestly and logically. Emphasize that your child did nothing wrong and stress that you are working with him toward a solution. Validate your child’s emotions by empathizing.”

Although this approach is valuable for those who support neurodivergent people on a much broader level, some people may find this approach more difficult than others. According to a 2014 study on self-compassion and how parents of autistic children react to their child’s diagnosis “how parents relate to themselves on an internal level impacts their well-being more than the circumstances they face.”

People like Paddy’s wife, Christine, prove just how true this is.  Last year, Christine received her autism diagnosis while filming the show.  She uses words that invoke pity, such as “emotional,” when describing her experiences finding out she’s autistic. 

To me, this suggests that she’s building a brand where disabled people are treated not as equals but as an inspiration for non-disabled individuals’ benefit (inspiration porn). Her children’s urgent need to find out they’re autistic isn’t top of mind because they are a non-consensual tool for profit and fame. 

Parents who want their neurodivergent kids to be happy, healthy adults need to avoid making their child’s experiences about them. Otherwise, they’ll project their insecurities on their children, which can have mental health consequences. ADHD, dyspraxia, and autism have high depression and anxiety rates. However, teaching your kids how to self-advocate with confidence can improve their long-term quality of life. 

According to Understood, here are the three critical components of self-advocacy:

• Understanding your needs
• Knowing what kind of support might help you
• Communicating these needs to others

Good self-advocates are more likely to do well and be confident in all aspects of life, but self-advocacy doesn’t fix everything. For neurodivergent people specifically, workplace discrimination rates are still very high. In every new relationship, we often face anxiety issues relating to past traumatic experiences in relationships. 

Self-advocacy is an underrated survival tool that helps you stick up for yourself and know when a specific environment is not the right fit for you.

Instead of living in shame, educate yourself as much as you can about the support that’s out there. But don’t get me wrong: forming communities of people going through mutual experiences can be both healthy and therapeutic (if you find the right people). 

As you talk to an increasing amount of people about your child over the long term, here’s what you need to keep in mind. Every child has a right to know about their diagnosis and decide how much information they want to share with other people. 

Your child’s diagnosis is part of who they are at all stages of their life, not part of who you are. 

The best thing you can do is support their choices as they gravitate towards a life that suits them. Not every child will choose a life that reflects what’s natural and normal for you and that’s not a bad thing.

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