At IMFAR and with other researchers I meet, I am confronted with many requests to participate in “parent studies.” The purpose is to study what levels of stress, and how different it is to parent and autistic child. I am reticient to participate. What about parenting are the researchers trying to find? Are we attempting to affirm that life is harder with an autistic child? Of course, we have to ask what the researchers are hoping to find. Is the purpose to support parents, the autistic child, or both? Or is there a more insidious angle to this kind of research, that is to say, that autism itself is the problem? I know, that may sound blunt and provocative, but think about it. To what end are we really getting on with the business of helping autistic people contribute to society as autistic people? How are we really helping autistic people and their families with their quality of life?
Honestly, I don’t see the purpose in trying to affirm that life might be tougher with an autistic child in it, and I’ve written about that with the unconfirmed (by research) assumption that autism is the cause of increasing divorce rates here. All I know is that when Adam is happy and accommodated, I am very happy. If he is excluded, I too feel isolated. What is it that makes the perception of life harder, then? What about society could assist in supporting us all? These are some of the questions I wish the research would tackle.
A few parents and some commenters on other blog posts have stated that some parents, myself included, are in a state of denial by insisting that we find joy in our children. Asserting that your child is a joy is not a denial of the challenges that we all face. The act of assertion is the affirmation that our children’s lives are important and valuable. On all counts, Adam has been my greatest joy. Yes, I get stressed in trying to understand his discomfort. No parent wants to see their child in distress, and we can focus on that in some of our research.
Most of the stress we faced lived in incompatible circumstances. Once I could see that our environment had to be calm, and that there was no time for compromise with people who had no interest in supporting us, life became a little smoother. I’ve had four years to wrap ourselves in the warmth of the people who really care about us. Let’s face it, our plates are full and we don’t have time for everyone. Energy must be spent wisely.
I dont’ like to give advice, but I’ve had a few thoughts over the past few years about parenting an autistic child. If there is parenting stress, perhaps evaluate the other underlying factors that could be relating to the stress instead of just focussing on the autistic person in the family. This would include all of your relationships, including the one with yourself. Think about how you communicate about autism, and consider changing your thought patterns, attitude and language surrounding it. I know that as a mom of Adam, I’ve had to work, and continue to work, daily at my expectations and putting them in check. I look at my own anxiety levels and what I do to add or detract from the stress. Even when I’m at my limit, I accept bad thoughts and let them go through me. I express them in private and then my head is clear again to see Adam for the beautiful boy he is. My attitude is very important. Loving and accepting Adam has also helped me to love and accept myself, which wasn’t (and sometimes still isn’t easy). Yet what’s the point in having a double standard?
When others have accused me of being in denial of other people’s stress or autism itself, I came to learn that my approach was my way, the way I was raised and my survival mechanism. There is absolutely no one who can tell you how you should raise your autistic child, and the assistance out there is on the journey as much as we are as parents. And, by the way, we all have a right to enjoy our children for who and what they are! It is up to us completely to advocate for our children — our right to have and enjoy them, to be included in society, for a good and suitable education, for accommodation, for respect, equality, and excellent opportunities and living environments into our children’s adulthood. There’s no getting around it and no excuses. It sucks some days, but we can’t complain. We have to stick together and stop the urge of research and the typical population to pity us. Pity won’t get is the services we deserve. If we continue on the path, we’ll just get the dusty old van and the group home. Not to knock some of the individuals there who sacrafice and provide for our children on a daily basis. It’s just that I think people with disabilities don’t deserve dusty vans and the poverty line.
I just think we all deserve better. Parents feel stress because of the lack of support, accommodation and acceptance. We feel it because we are stared out in the check-out line, or at the park, or while waiting to get into school. We feel it when someone marks “retard” on the picnic table outside our kid’s school. Can you add ot the list? Yes, our children indeed have challenges. Stigma makes these challenges a whole lot more difficult. Now think of how the autistic person must feel.
On the up side, there are many couples and single parents who have found their niche and who have pulled together with stronger families because of the challenges that an Abelist society brings to us every day. There are friends who really pull for us and who believe in us as a whole, not a fractured, family. There are people rooting for us in every way. Here’s where to put our focus.
I have only one child. Sometimes I think the time I spend on Adam may be like raising a group of children, but he’s worth it. He’s worth doing the IEP, organizing programs, doing advocacy work, managing teams, people because there are so few autism services and programs suited for the autistic person. It’s like inventing the wheel over here. I don’t have to manage the jealousies of same-aged siblings who don’t understand why so much more time is spent with the special-needs child in the house, and even the sudden “adult” responsibilities they may feel. I know of many parents who do. We all have our own package of issues, though.
I hope that researchers doing parent-studies have these points in mind. Society’s view of disability has a great deal to do with how we parent, how we view our lives, how we convey autism and disability to our communities and future generations, and how we are supported. It’s not the fault of autism or the autistic child. We must be so cautious in slanting any research in this direction.