To Grieve Autism or Not To Grieve Autism…May Not Be the Actual Question

Grief is the acute and complex pain that accompanies loss. Grief follows the loss of something loved or valued, including a person or relationship, a companion animal or life-long dream, a job or other significant life role, or possessions of remarkable emotional meaning. Grief is a hurt that cannot be fixed by someone glibly suggesting you “suck it up” or admonishing you to “get over it already”. Our society has embraced the healing and cathartic role of grief, created ceremonies and rituals to help metabolize grief, and elevated the display of grief to a sign of strength and character.

Parents routinely grieve for and because of their children; like when a child starts kindergarten, engages in sex “too soon”, moves away from home, attends a non-preferred university, quits a sport the parent played, discloses they are gay, or converts to a different religion. Should a child’s autism diagnosis be any different?

(I know, I know, if you are autistic, you are screaming “YES!!!!!” at the screen and debating whether or not to finish this article. If you are a neurotypical, your answer is likely different. Either way, please, read on.)

Upon learning of their child’s autism, neurotypical parents immediately assume their child’s experience will deviate from some (parental) preferred path. They grieve their “dream” child, who would have achieved certain life milestones following a familiar trajectory. Parents grieve what they thought their child would experience, whether that is a particular life with their child or the life they hoped their child would have.

An autistic client compared the parental reaction to autism to a very common experience, saying, “Have you ever applied for a job, were certain you would get it, started making plans based on it (like quitting the previous job) only to find out you didn’t get it? It’s like that times one million. It’s easy to say you just need to change your perspective, which you do, but that does not mean you aren’t sad about the life you expected for yourself.” The need to grieve is a product of difficult-to-stifle parental expectations born far before the baby. Autism is not a common page in the parental dream book.

If, even for just a moment, you can check your disgust and contempt for the “grieving parents”, a troubling reality comes into view. Certain organizations have tainted society’s understanding of what autism means. Certain voices have skewed the narrative about living with autism. Certain forces have infiltrated our culture to render competent autistics an oxymoron. Most of those voices are not autistic.
Grief materializes in the absence of accurate information and meaningful, diverse representation of autistic people. Ultimately, we must recognize the grief reaction as the wake from the destruction waged by Autism Speaks, anti-vaxxers, and Jenny McCarthy acolytes.

Parents need to grieve. Often, they are neurotypicals, which means they may lack autistic empathy – empathy for autistics and empathy as experienced by autistics. Neurotypicals misconstrue pity and/or sympathy for autistics as meaningful perspective taking and compassion. They are oblivious to the consequences of publicly bemoaning “Little Johnny smeared feces on his walls again today” or claiming “AutismMom/AutismDad” hashtags to document their “struggle”. Autistic-empathy-deficient neurotypicals also dismiss or discredit the deeply felt emotions of autistics because autistics emote differently.

However, if we allow neurotypical parents to grieve, then let’s be clear about the cost. Autistics suffer profound, heart-breaking, and infuriating damage. The very mental health professionals who encourage neurotypical parents to grieve contribute to the anti-autistic culture and the myriad expressions of autistic trauma, including self-doubt, low self-esteem, depression, anxiety, self-hatred, suicidal ideation, eating disorders, and suicide. Autistics are traumatized by their unintended “failure” to achieve goals they never set for themselves.

Put another way, neurotypical expectations, neurotypical life goals, and neurotypical timelines placed upon autistics promulgate severe damage and loss for autistics. And, whether they like it or not, neurotypicals need to face and confront the reality that autistic people are exasperated by and angry that autism has been so poorly represented and understood that parents are led to grieve.

If we expect and allow neurotypical parents to grieve, then we must expect and allow autistics to grieve. They grieve their back seat in telling the narratives of autism. They grieve the hyperbolic, simplistic caricatures of autism portrayed by the modern media. They grieve the persistent, egregious lie that vaccines cause measles, mumps, and rubella as well as the painful preference for measles, mumps, rubella, and death instead of autism. They grieve websites, Facebook pages, and Twitter accounts devoted to disseminating deadly “cures”. They grieve the lost potential of the revenue and attention misappropriated by Autism Speaks. They grieve the indelible scars ABA branded on their minds. They grieve the death sentence associated with autism. They grieve the comparison to a phantom dream child, while they exist perfectly and awesomely in the flesh, in reality.

Imagine these children as adults, because autistic children become autistic adults, reading everything posted about them: What they won’t be, won’t have, and won’t do. They are reading an obituary. Their obituary. Perhaps that is the real loss — an imagined death founded in an alternate reality, or, perhaps, more pointedly, autistic adults as living casualties. What if instead the narrative was celebratory, inclusive, and invested in giving back with a strong theme of community and self-determination?

Grieving may come when a child is diagnosed with autism, but in allowing this expression of grief, we must also acknowledge that autistics must grieve as well. Instead of continuing to debate who is allowed to grieve the various injustices in the situation, perhaps all parties are better served if we agree that everyone has reasons to grieve. In allowing both parties to embrace the healing and cathartic role of grief, while also acknowledging the costs, both parties can begin to work together to rectify the damage.