An interesting post on A Life Less Ordinary blog (see blog list right) generated much discussion recently. The author, Emily, posited a question about whether it is OK for parents to experience a grief reaction to the diagnosis of Autism in their child. This probably seems like a no brainer to most parents, however some argue mourning the diagnosis is an indication of egocentricity on the parents part because they did not get the 'mini me' they were banking on. Many who hold that view are, understandably, Autistic. I even posted a link expressing those sentiments some time back titled Don't Mourn for Us by Jim Sinclair. The view seems to be that any sadness on the part of parents is a lack of acceptance of Autism. That it's a problemmatic narrative that serves to marginalise ASD kids from their community, and worse, their family. For many of the people who hold this opinion neurological diversity is to be celebrated. They embrace their autism and the unique perspective it gives them on the world. I really can appreciate why they would be invested in this position.
Here's the problem I have with it. I am not Autisitc (well not formally). I don't know what that unique ASD perspective looks like. All I have to go on is what I see in my son, what I hear through talking to other parents, and what I read. Very few of the stories, including my own are rays of sunshine. I am yet to meet a parent who said they were so happy with their child's manifestation of Autism that they were going to try for another child in the hope they could have 2 ASD kids. Tellingly, many who hold the anti grief view are not parents. Clearly these Autists are for the most part high functioning, and probably sans epilepsy. Perhaps they are not suffering the depression and anxiety that so many are. And if they were would probably blame a lack of understanding by the NT community rather than as an example of how their neurons are misfiring.
This is probably not a black and white issue. People who cannot move on from their grief may be acting in ways that are adding to the difficulties their child already faces. Maybe some are just riding a wave of self pity that disallows opportunity to see the strengths their ASD child may possess. That is a shame in those cases. But lets remember all those loving parents who are struggling to negotiate the medical mine field, the guilt that we as parents may have done something to trigger this disorder, the daily grind of therapy, the financial stress for many families who drop to one income to ensure therapy is as intensive as need be. The public misunderstanding about your childs behaviours. The worry about how they will manage once we as parents and protectors are no longer around to ensure their wellbeing. The concern about how they will manage those tough school days. The emotional lability that leads to uncontrollable meltdowns.
I dont project too far forward when it comes to thinking about my kids futures. What I, and most parents, want is for them to be happy and healthy. It seems to me that a neurological disorder is hardly the best example of health. I am grateful Harri is not physically unwell. But it's hard to imagine his lifelong disbaility won't at times impede him. I feel sorrow for that. I dont want another child. I don't seek to cure him. I think I have a clear understanding of his limitations so far, and I will try to help him minimise those. I will adore him despite his frustrating behaviours, and there is no one on this planet who could argue I love him less than his NT siblings. But I do feel sad. Very often. Maybe there is a lot of projection in that sadness, but it is not born out of egocentricity, rather maternal love and concern.