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.
Sharon,
ReplyDeleteSome people are offended at any expression of grief, but some people are likely to be offended no matter what you say.
Most of the people I've interacted with who are offended by expressions of grief are offended by how they're worded and the meaning they express. Consider this expression of grief: "I hurt because this isn't what I expected when I first held my child and I feel lost, because I'm not prepared to raise a child with autism." Compare it this: "Finding out my child was autistic was like being told he'd died. I don't want an autistic child! I want my normal baby back!"
Those are both extremes, but the first is about the parents grief, the parents emotions. The second deflects those emotions onto their child and autism.
You have no control over whether you grieve. Most reasonable people should understand that, including most autistics. However, you do control whether you recognize where that grief comes from (unmet expectations versus this awful child you have and the awfulness that is autism) and whether you respect others as you express your grief (I worry about my child's future versus I wish my child were dead).
Your third paragraph is spot-on the reason I wrote my post. There are adults in the autistic community that are so focused on their own struggles they don't realize that most parents of autistic children are not online, they're not blogging daily--they're just trying to get through one more day. There are well-meaning people who don't realize how difficult it is to spend your youth and early adulthood learning how to raise a child, only to find out that just about everything you've learned doesn't work for raising the child you have. It is traumatizing, and there's not enough mutual understanding going on.
Hi Stephanie,
ReplyDeleteGreat comment. I agree it is the expression of grief rather than the emotion, that is offensive or otherwise. BUt I think we need to cut people some slack. Grief responses often mean people do and say things they would not under less traumatic circumstances. I completely agree with you that there is not enough mutual understanding. Again, that can be seen as a common by-product of people struggling under the weight of their own issues therefore not having the emotional space to consider others.
I really appreciate you taking the time to read my blog, and more importantly to leave such well though out comments. Thankyou Stephanie.
Sharon,
ReplyDeleteExpressions of grief are difficult. Whenever someone is in a highly emotional state, they may say things that they don't really mean the way they sound. But sometimes giving parents the slack they need is difficult, because I, for one, don't know whether it's slack they need--or intervention.
There are many parents who are struggling with grief, traumatized by the autism diagnosis, and lost in a system that doesn't give them what they need. They genuinely love and respect their children, but they are struggling. They need our compassion and they deserve it!
But there are also parents who do not love and respect their children. There are parents who murder their autistic children, because they honestly believe an autistic life isn't worth living. They need intervention. They need someone to say or do something that will open their eyes to the worth of their child and prevent the real tragedy--the murder of an innocent life.
But how do you know which is which? I don't know. I try to be compassionate to all, but I cannot understand parents who empathize with those who murder children. When I come across a parent who is saying they feel like their child died, I want to believe they are grieving their expectations and will come to realize that, while unexpected, the child they have is a wonderful addition to their lives. But I can't help but be haunted by the possibility that, instead, what they really mean is that an autistic life is worth living.
I agree with all you say Stephanie. I think there's a reasonable time frame in which we can start to get a sense of whether someone is processing new and traumatic news, or whether they are in the other camp. It's a tough call, but I think how they use language is often a give-away. AS you point out.
ReplyDeleteEven the most devastated parents will still use terms such as love, when referring to their child. If that term is always absent, then i see a red flag. Sadly, my years as a social worker taught me that those who pose the biggest risk to their children are often the hardest to reach and influence.
I appreciate that the experience having worked in social work brings to the discussion. My best friend is a social worker and I know she knows way, way more about the signs of abuse and neglect than I.
ReplyDeleteThat being said, I'm not sure the use of "love" is all that telling. One of my first awakenings to this issue was an article in the Sunday Times, "A Mother's Leap of Love." Published in 2006, it described an autism-related murder-suicide, and it quoted a family member as calling the murder-suicide "an act of love."
http://www.timesonline.co.uk/tol/news/article722500.ece
I don't understand that response by their family members, but it puts the use of the word "love" into question for me.
Well I suppose the family members comment reflects the point we have already made about the thoughtless things people say when they are grieving. I can understand why the 'act of love' theory would be far easier for that person to lve with, than the more obvious and less endearing reality.
ReplyDeleteBut I should probably qualify my statement. If parents can use lots of positive terms to express features of their child, whilst lamenting the dx of Autism I think that's a good sign. It reflects a healthy emotional connection to the child. Those whose language is saturated in negativity,that is only focussed on the dx can be indicative of an emotional disconnect. Obviously it's a very simplistic assessment and to ascertain actual risk many other complex factors need to be taken into account.
Stephanie, tell your best friend I am impressed with her ability to stay in the job. I burnt out a few years back and could never imagine returning now. Bloody hard job.