To tell or not to tell?

The disclosure of being autistic to children from a parent’s perspective.

Parents* unbeknownst to them, enter into an arrangement when they have children; to protect them at all costs. Of course, when a person considers this so-called ‘arrangement,’ more often than not they are thinking about physical and mental harm. That is, protecting them from abuse, bullying, shielding them from death and matters of that sort. What parents often aren’t aware of are neurodevelopmental differences such as, Autism Spectrum Disorder (ASD), Attention Deficit/Hyperactivity Disorder (ADHD), Intellectual Disability (ID), etc. When a child is diagnosed with one of the many neurodevelopmental differences, the parents are often thrown into a world of acronyms, paperwork and appointments without any information or support, bar some links to a couple of websites. That’s if they are lucky!

As a parent of two autistic and ADHDers also known by, the increasingly popular acronym of AuDHD, a combination of the two, and one with a Pathological Demand Avoidant Profile (PDA) I understand all too well, that the minute you hear the diagnosis from whoever the professional is, that the world instantly becomes confusing. The most confusing part being, ‘How do I tell my child?’ or ‘When do I tell my child?’ Both excellent questions, but I am sorry to say that no one can answer that for you. Smith et al (2018) discuss that the decision to disclose is layered and complex because the diagnostic process is still deficit-based. Meaning, parents go through the process and are thousands of dollars out of pocket and also feel like there is something ‘wrong’ with their child. Moreover, there is still an element of stigma attached to the autistic diagnosis and therefore there is understandably an element of shame or embarrassment. It is no wonder parents do choose not to share the diagnosis.

I have met many parents who have made the decision to not disclose the diagnosis with their child, and it almost always comes back to fear of societal perception and acceptance. On the other hand, I have met may parents who have always discussed a child’s diagnosis with them and it is no different, in that family, than if someone had left-handedness or a medical condition.

It would be remiss of me to not highlight that professionals who diagnose ASD, rarely support parents in what to share with their autistic child and how to share it which can lead to anxiety (Crane et al, 2021). Further to this, these professionals who see multiple neurodivergent children every day, seemingly, take for granted their knowledge of the topic and parents reported that the diagnostic process was heavily deficit-based and doesn’t allow for neuro-affirming professionals to take a strengths-based approach (Crane et al, 2021) because of how the diagnostic process is designed.

Understanding who we are as individuals, particularly as we grow from childhood into adolescence and adulthood is a key contributor in more positive mental health outcomes (Cooper et al, 2017). It could be argued that knowing if a person is neurodivergent is just as important as knowing their sexuality, gender or family history. It is how the brain is wired, we cannot change it, nor should we want to. However, we can empower our children with the knowledge of exactly who they are, to the best of our ability.

I received my AuDHD diagnosis in 2022 in my 30s. As a cis-het white female, I’m sure that will surprise very few, if any. I honestly felt an enormous sense of relief hearing the words, ‘You have met the criteria for Autism and ADHD.’ It meant I wasn’t, for lack of a better term, “crazy.” I was different. I am different, but EXACTLY who I am meant to be, as are my children. We are imperfect humans, just like everyone else.

*Parent refers to any adult raising neurodivergent children

References

Cooper K., Smith L. G. E., Russell A. (2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47, 844–854. https://doi.org/10.1002/ejsp.2297

Crane, L., Lui, L. M., Davies, J., & Pellicano, E. (2021). Autistic parents’ views and experiences of talking about autism with their autistic children. Autism, 25(4), 1161-1167. https://doi.org/10.1177/1362361320981317

Smith, I. C., Edelstein, J. A., Cox, B. E., & White, S. W. (2018). Parental Disclosure of ASD Diagnosis to the Child: A Systematic Review. Evidence-Based Practice in Child and Adolescent Mental Health, 3(2), 98–105. https://doi.org/10.1080/23794925.2018.1435319