Rethinking Unhappiness

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

42 responses to “Rethinking Unhappiness

  1. Michelle Sutton (Amazing Adventures)

    Great post! Sometimes when I read your articles I can see we have been travelling a very similar path. I’m enjoying your blog a lot.
    From another happy parent 😀

  2. Yes, great post as always! I must say though I am thoroughly confused by those who do not believe there can be happy parents of autistic children. I do not equate one with the other. My boys (all three on the spectrum, albeit in different places) are never the cause of my “unhappiness.”

    In fact, I could say that my own autism caused my unhappiness because I didn’t know that is what was going on…since I was not diagnosed until I was 38 years old! And, my boys were not recognized until after I was diagnosed–then the light bulbs started to go on. My autism has actually made me happy…what I should say is that my knowing that I am autistic, that there was an explanation for what could not previously be explained has been a huge relief and source of contentment and happiness.

    Maybe because my brain works differently I had trouble making the connection?

    • I think it’s hard for a great many people who’ve never felt their happiness depended on others, to understand. For others, (like me) it can take a while to figure it out!

  3. Yes! Yes! Yes!
    (((Ariane)))

  4. Just when I think your posts can’t be any more awesome, thereyougoagain. 🙂 Thank you for yet again both articulating an experience that resonates so much with mine and doing so with an elegance that takes my breath away. So looking forward to meeting you (and Emma?) this summer in Syracuse! Blessings all around!!

  5. I’m happy! I was never really sad about my child but sad about how some would treat my child. Talk about my child or have opinions about what parenting decisions I make for my child. That stuff always made me hurt and up set. Oh but I’m not ever unhappy about the child him self. No not really. So they’re happy parents out there. We wake up laughing and go to bed happy. We are proud of our kids and yep we do all the family things that any family does. In fact I’m happy right now watching my child play. He’s happy, I’m happy. Happiness in parenting a child on the spectrum isn’t about not having hard times or moments. It’s understanding that each moment is just that a moment. It’s living in the moment. If parents learn this they won’t even feel they are unhappy. They will notice how each day is filled with challeges but they will see moments of themselves being happy. Just my two cents. It’s not hard to be a happy parent. It’s harder tho if people keep telling you why you should be down and miserable. If someone keeps saying to you aren’t you miserable or shouldn’t you be sad. They are trying to talk you into something. Because misery loves company. Another suggestion I have for un happy parents of ASD kids is start surrounding your self with happy parents of kids on the spectrum. It rubs off.

  6. I think you should call this, “Rethinking HAPPINESS,” because that is where most people get confused. They think that everything around them has to be “perfect” in order for the happiness to land on their doorstep. Your incredibly powerful child has taught you that ONLY YOU hold the key to that door. Thank her everyday for that lesson and gift.

    • Funny you said this, because that’s what I had titled it first and then changed it because I didn’t want people to take it literally – that I was suggesting happiness was a bad thing. 🙂

  7. If we are honest, and you are, we had a hole inside before we found out our child was autistic or fill in the blank, or name some other life event… So maybe some of us try to fill that hole with ..fill in the blank…
    For those of us who work on stitching up the hole inside ourselves, our children…all our children…are better for it.

    • Someone said their happiness was contingent upon their spiritual well being and even though I am not involved in any religious institution I understand that, it makes sense to me. Filling the hole… yup.

  8. absolutely wonderful

  9. Look lady. You have had a huge epiphany. Like on a write a book and change the world level. What you say about life and living is so powerful.

  10. Ariene, what did it take to get you to make the connection/turn the corner on this? I have an acquaintance that really needs to make this leap, for the health of her, her autistic child, and her family, but she’s so angry that I’m afraid any approach I make will just make her go further down the wrong path.

    • Oh I’m really sorry to hear this.
      There were a number of factors that played a role, one of them being that everything we tried wasn’t “working”. In other words we were hoping to “cure” her and nothing we did was doing that, so after many years of trying a whole range of things, I became despondent, but with that I also began to realize that I might not “win” the fight. Looking back now I’m so grateful nothing we did seemed to help, because if it had, I might not have ever stopped. About a year and a half ago two things happened almost simultaneously. The first was a parent came out with an article with the title something like “Autism sucks” or something like that and a huge number of Autistic people commented on her thread saying how insulting this was. I didn’t understand and wanted to understand. So I spent a whole night staying up and reading this comment thread and then going to all the blogs that each of the commenters had. Right around that same time I was sent a link to a blog written by an Autistic woman, Julia Bascom. I’ve written about much of this, https://emmashopebook.com/2012/10/04/how-my-fears-drove-me-to-pursue-a-cure/
      https://emmashopebook.com/2013/04/15/will-she-be-okay/
      https://emmashopebook.com/2012/08/27/want-to-know-about-autism-ask-an-autistic/
      so I won’t go on and on, but her blog, Just Stimming, had an enormous impact on my thinking. It was like a light bulb switched on. I started to “get it.” And from Julia’s blog I immersed myself in other blogs written by Autistic people. Some spoke to me louder than others, but they all helped chip away at my beliefs, the things I thought I knew, and my self-pity began to fall away as I realized I had a beautiful child right in front of me that I just hadn’t been able to fully see. I also became aware that I was actively harming my child with my erroneous negative beliefs and assumptions about her. There were other factors that helped propel me forward, certainly the fact that we were less stressed and angry was something that our daughter picked up on and responded positively to. Ironically the thing that has helped my daughter more than anything else has been our acceptance and presuming her competence.
      https://emmashopebook.com/2013/03/07/presume-competence-what-does-that-mean-exactly/
      Sorry for throwing all these links at you, but if you’re interested they give more details about the whole process better than I can write in a comment. I hope this helps, even if just a little. The biggest thing for me, and what continues to be enormously helpful are my Autistic friends. Finding Autistic adults who do not use verbal language as their primary means to communicate has made a massive difference too. In the end, it’s been Autistic people who’ve given me the most hope, not just for my daughter, but for all humanity.

  11. You seem like a great and spectacular mom.

  12. Love this and you!

  13. My son, 13, basically ‘ignores’ his autism. At first I worried about his ‘denial’ but then it gradually dawned on me that it was in fact a form of ‘acceptance’, He is who he is – like him or leave him. I realised that instead of me trying to make him ‘fit in’, I should just leave people to either accept him or ignore him. He has a couple of really good friends – gorgeous neurotypical boys with good hearts — who don’t judge him but just smile at his weird sense of humour (they tell their mums he’s the funniest person they know) and others appreciate his huge font of knowledge about things such as Minecraft! My boy is comfortable in his own skin and has passed on to me his take-it-or-leave-it attitude, making me much more relaxed. I love his company – he’s the funniest person I know too. I’m sure there will be challenges and concerns but in the main I am a happy and proud parent. Glad to meet another one!

    • Hi Lesley,
      Thanks so much. What a great comment! It took me well into my thirties before I had any “comfort in my own skin”! So great your son already has that!!

  14. Joy as an inside job. Perfect! Accepting ourselves and others with love and taking ownership of our joy – modeling this for our children is an act of love.

  15. I’ve stopped trying to force my son with aspergers to do all the normal family activities that must have been causing him stress, so he is much happier. So perhaps I’ve taken the first step: now I need to work on myself, how I transform myself into a happy parent is, I think, going to be more difficult. Am hoping to learn more here 🙂

    • Having spent the majority of my life extremely unhappy, I can definitely say I prefer being happy than not. But even so there are days when I am decidedly not happy, but more and more I see that my state of contentment and happiness is in direct proportion to my expectations and what I think I want and need and not necessarily what I have. When I can gently bring myself back to the present and remind myself this, I often find I am calmer and yes, happy! 🙂

  16. Brilliant. I wish I could take back the 15 years I wasted being so ‘disappointed’ with my daughter. I thought she would grow out of whatever she was, so when she was finally diagnosed and we got over the shock, we finally started to experience happy again. Now I can see all the brilliant things she does have instead of all that she doesn’t.

    • “Now I can see all the brilliant things she does have instead of all that she doesn’t.” This was so reminiscent of my experience too. I keep telling myself when I fall into regret that I didn’t come to this sooner, that at least I came to this place at all. Thanks so much for commenting.

  17. I blogged about that same article…I read through a few pages of the comments and finallly had to stop I was so angry…

  18. It’s tough… the more of us who present another way of being, another way to seeing things, the more likely others will begin to question the information society and all of us are being given and perhaps find themselves happier as a result.

  19. “It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.” Love that reading this post I realize that it is not me but rather my mother’s perception of me that’s making her unhappy she constantly refers to me as “slightly sick” and every time she talks about me I can hear the sadness in her voice sometimes I feel like saying to her “stop acting like your child is dead I’m right here I am just different than you thought I would be.”

    • Aw Nisha… you know what I see? I see an amazing young woman who works incredibly hard and through determination, grace and formidable strength of character continues to make great strides toward her goals. I am cheering you on, Nisha. I’m cheering you on…

  20. Angus Skinner

    This is beautiful Ariane, thank you. It also reflects my own experience, my daughter now in her 30’s is autistic and has other disabilities. The key sentence for me was your one that ” I stopped trying to cure my child of herself.” For me that is a lesson I have had to learn and relearn so many times, still do; helpfully, I think she has stopped trying to cure me too. Each moment has to be fresh.

    • Thanks so much for commenting. I think the word “cure” can be used for just about anyone we wish was more the way we want, husbands and wives can get in line first!

  21. Love your post and approach. I have accepted my child as is, since his diagnosis last year at age 13. I realize their is a lot to be thankful for. My son is high functioning. I just pray my husband can accept my son for who he is so they could have less fights. I realize my role is even more important at this stage.

  22. Natalia Erehnah

    Love this post. I found my greatest happiness and accepted myself, AFTER I accepted my children, when I realized there is nothing to fix. It’s an incredible journey.

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