It’s taken me decades to figure out that whenever I am angry, fear is lurking. All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate. It’s still not the first thought I have when I am angry about something. It’s not even the second thought. In fact, I’m lucky if it’s something I can remember at all when I’m angry. Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were. But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go. It was the fear that made itself known to me; the anger was far more subtle and insidious.
“When you sense a threat your mind generates fear and anger. The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat. What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness
I understood things like the above paragraph. In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined. What did the future hold for my daughter? How was she going to get through life? How would we be able to keep her safe? How would she fend for herself? Would she be able to fend for herself? Who would take care of her once we were gone? Fear. Fear. Fear and more fear. And then, without even realizing it, I would find myself furious. Enraged. And my rage found the perfect target. Autism. Autism was what I was furious with. Autism was what the problem was, so it stood to reason that if I could remove it, all would be well. So this is what I set out to do. Except that my daughter happened to be Autistic. But if I didn’t say it that way I could continue to separate the two. I could continue to tell myself I was fighting the autism and not her. I could continue to believe that my anger with autism would not affect her.
“Anger is the natural emotional reaction to what the mind and imagination are doing. The way to overcome anger is to change how the mind imagines stories and how much you believe them. When the mind imagines painful scenarios you naturally produce anger. To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger
That quote more than any other sums up exactly what happened. I had to change the story that my mind was imagining. Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch. I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one. I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant. I had to be open to other ideas about it.
For me that began with reading books. First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog. From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships. People I have grown to love deeply. I had to find people who were non-speaking, or spoke intermittently. I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people. And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities. The very things I had been told could not, would not be possible for my child.
“Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning
And so I found I had a choice. I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up. Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice. I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it. Because my fear has me running away and my anger has me shouting, either action keeps me apart from others. I have learned that the answer to both is to do something else. And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.
Emma's Hope Book 
Thank you for your words. I hope many people are encouraged to walk down the path you tell about. At this point in history most autistic success is measured by how neurotypical we look – the presumed gold standard. LOL It is what it is and the winds of change are stirring. Thanks for giving those winds a boost today. Please never stop.
“The winds of change are stirring” yes, I think they are Judy. Thanks for all you do. Thanks for being the change!
Thank you, I cannot tell you how much this speaks to me and our life. I can almost feel the knot in my stomach releasing a little.
Oh Cari, thank you for commenting. I’m so glad!
Wonderful post. You express so well what so many of us feel but struggle putting into words. Love you Ariane. Can’t wait til the day we and our daughters meet.
Marilyn! Me too. Really look forward to meeting you both!! ❤
How did you go about meeting autistic adults? I would love to do this, but don’t know any and haven’t had any success in asking local organizations if they have or would be interested in starting mentor type programs for younger kids with autism to connect with older kids or adults on the spectrum. I am in the Minneapolis/St. Paul area if anyone knows of any autistic adults, autism advocates or autism bloggers that would be willing to connect up.
One of the single best places is at a conference like the AutCom conference coming up in the fall. I believe it will be in Denver this year. TASH has conferences too. Any conference that has Autistic people as part of its leadership and who are presenting are good places. One of my closest friends, Ibby I met at a disabilities conference where she was speaking. But online is a good place to. There are lots of FB pages, such as The Thinking Person’s Guide to Autism and Autism Women’s Network, there are many and if you go to the threads, many who comment are Autistic. If anyone says something you like, you can “like” it or even respond. Over time relationships can be built. Many people who comment here are sometimes willing to reach out to other commenters. It can take time, but it is possible and well worth making the effort.
I don’t know anything about this group except what is on their website. Someone posted this on Facebook about 6 months ago, and I remembered it when you said you were in Minneapolis/St. Paul. It might be worth checking out. It is a program where young adults with autism take groups of people on tours. The autistic young adults get a chance to share their area of expertise. The tours are free. I remembered it because I thought it was a great idea and wished it was closer so that I could take some of the tours.
http://www.eriksranch.org/livehere/minnesota/takeatour/portfolio.html
Thanks. This place looks really awesome. I will be sure to check them out.
Hey Ariane~
I love your post today. I’m too shy to post anything publicly but please know that your words have relevance-daily-in my life.
Emma and Nic were great on Sat. nite’s sleepover btw. Nic was big brother as usual helping Ems when needed. But she really didn’t need much coaching or guidance. When Nic told her to get dressed in the morning to go home, she negotiated an extra minute of “me time” before doing what was asked of her. Good for Emma!
Around bedtime, I lowered the dimmer on our light over the dining table which I thought would induce sleep, but she didn’t want it lowered and turned it back up. We kinda did that dance one more time, until I realized it didn’t matter what I wanted. Let her take control. Fine by me. Go Ems!
Can we do this again soon? I love having them.
And we need another night out all of us! I really enjoyed our outing last time.
Let’s pick a night? What works for you guys?
xoxo
Jill! Did you mean to post this here? Because it is public in that anyone can read. I removed your cell, as I figured you wouldn’t want that just out there and anyway, I have it!! 😀 Yes, yes and yes! Thank you so much for having them. Em was ecstatic. And yes, let’s figure out a night. Did I send you an evite to the “play date with jewelry”? I’m sending it to you right now, with a whole lot of love.
az, i look forward to your blogs every day. your wings are extending far beyond autism and that is how it should be. love should b
Beautiful B. Thank you for your lovely comment. When is the audio book coming out. I have not so patient friends who want to buy the audio version! Also I will write about it here and on Huff. So tell me, tell me when. I’m going to send you an email now. ❤
Images connect to me with immediacy. Your picture with Emma makes this post even sweeter. You have a beautiful, beautiful soul.
❤Thank you so much Lori. ❤ A neighbor took that photo of me and Em waiting for her bus a few years ago.
On fear..and anger experienced by the parents of a newly diagnosed child – Agreed!
Good to hear from you!
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