Remembering Clara Claiborne Park: Raising an Autistic Child, The Last Word Is Still Love

I like to refer to our life raising our 13-year-old son Charlie, who’s on the moderate to severe end of the autism spectrum, as a long road. Very often it’s bumpy, and there are potholes, and puddles, and seemingly endless uphill spots. And, it’s often very hard to know where a twist or turn might lead or what path to take when a fork appears.

What lies ahead is a bit clearer—partially mapped—out for us, thanks to one woman, or rather, two women and their family. The two women are a mother and daughter, Clara Claiborne Park and Jessica Park.

Jessica Park was born 51 years ago and diagnosed with autism as a young child. At that time, autism was considered a very, very rare disorder. Receiving an autism diagnosis for one’s child was akin to receiving a death sentence. Families were told that the outlook was completely hopeless for their child and that the best course for everyone involved was institutionalization. Too, in the 1960s, autism was considered a psychological disorder caused by bad parenting, by ‘refrigerator mothers‘ who were emotionally ‘frigid’ and failed to bond with their infant children, who went into an ‘autistic withdrawal.’ Self-styled early childhood ‘expert’ Bruno Bettelheim wrote about autism in a book called The Empty Fortress: Infantile Autism and the Birth of the Self that was published in 1967. In this book, he compared autistic children to the prisoners in Nazi concentration camps and the parents of autistic children to, yes, SS guards.

1967 was also the year in which Clara Claiborne Park published a book called The Siege: The First Eight Years of an Autistic Child, an account of exactly that, Park’s and her family’s experience raising her youngest child, Jessy. (The book’s subtitle is now ‘A Family’s Journey Into the World of an Autistic child.’) After learning that Jessy was autistic, the Parks decided they would raise her on their own, with their family of three older children, and The Siege documents this, in the days before there was any Individuals with Disabilities Education Act, before autism was widely known about, before there several autism organizations across the country and around the world (including organization started by individuals on the autism spectrum themselves). Park took Jessy’s education into her own hands and The Siege narrates the long days teaching a child who no one knew what to do with. Park’s second book, Exiting Nirvana: A Daughter’s Life with Autism (2002)—it’s one of my favorites—exquisitely describes Jessy as an adult: She has worked for many years in the mailroom at Williams College in Massachusetts (where David Park is now retired from teaching physics) is also well-known for her curiously precise, multi-colored paintings of buildings and other structures. 

In both of her books, Clara Claiborne Park also notes her own ‘development’ as she learns more and more about autism and how Jessy herself perceives the world; notes how far Jessy has grown since she was a small child staring a spot of light on the floor for hours, while still acknowledging her daughter’s lifelong challenges. I’ve learned a lot from both of Park’s books with their careful accounts of the systems of ‘flavor tubes,’ clouds in the sky, and open and closed doors that Jessy, at various points in her life, used to make sense of the world as she could. Most of all, I admire, and strive to learn from, Park’s quiet courage and unstinting love for her daughter, all clear in every word she wrote.

Clara Claiborne Park passed after on July 3rd at the age of 86. I, and many other parents and families of autistic children, are grateful every day for her advocacy in the years when so little (really, almost nothing) was known about autism, and for her and her family’s resolution in raising Jessy at home and in her sharing her family’s story. 

Many years ago I taught at Williams College and I know I crossed paths more than a few times with Jessica Park as I picked up my mail. And, thanks to a friend at Williams, I was able to speak once over the phone to Clara Clairborne Park and to thank her for making a trail for families and individuals on the autism spectrum at a time when there was none. As she wrote in an Epilogue to a revised edition to of The Siege published in 1982:

‘…….if today I were given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an imagined life. And I will not change the last word of the story. It is still love.’

Photo by Niffty.

76 comments

Jewels S.
julie S8 years ago

acceptance, support and love are the most needed resources. What a beautiful story. I love how these parents listened to their heart instead of following blindly what the doctors who had no idea what they were talking about recommended. This is what it means to live in spirit. When you live in spirit, you can live life in a more balanced way. Namaste and bless all that can see through all the gunk that is pushed on us these days.

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Marianne Good
Past Member 8 years ago

I've a son who has autism and retarded development. I have learnt to value the wee little gold dust every day as the most precious of highest reward for all efforts being done. Thank you for sharing!

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Cristiane P.
Cristiane P8 years ago

I don't have kids but I can imagine how it might to raise autistic kids! I like to think you guys were chosen by God to receive a really precious gift not many parents would be able to handle cause it's so delicate and easy to break!

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Kaye Skinner
Kaye S8 years ago

And the first.

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Natalie H.
Natalie H8 years ago

I've just finished reading a book entitled ' A Friend like Henry' about a wee Scottish boy with severe autism who was helped to challenge his autism through his dog called Henry. It is an inspirational book and has taught me so much about autism and the triumph of love and determination of his parents and therapists. It should be on every educational/health care workers reading list.

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gary s.
gary segraves8 years ago

God bless all you folks who have Autistic kids! I have a sweet nephew who is very low on that scale they talk about. I'll tell ya this folks,.....FIGHT LIKE HELL for your kids!
If a doctor ever told me to "institutionalize" my kid,......he might not be able to SAY anything for the next few days!

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Beng Kiat Low
low beng kiat8 years ago

thanks.

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April Thompson
April Thompson8 years ago

What a tribute! I have worked with autistic individuals of various ages and I found it to be so very rewarding for them and for me!

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Paul V.
Paul V.8 years ago

This article is very touching! My former preschool teacher, Carole Kuehl showed me this and asked me to share my life story. My parents took me to several doctors within the southeast Kansas region and most of them weren't able to figure out what was going on. One doctor didn't pay the slightest bit of attention and told my parents I should be in a mental institution for the rest of my life, and THAT set off the ticking time bombs we know as my parents. We got to Wichita and a doctor was able to explain it to my parents I have autism, I was diagnosed at the age of 2. My parents found a preschool called ANW Coop, and that is where we met Carole, who has made THE BIGGEST difference in my life. We knocked down barriers, proved to people that I can do something with myself even though I am autistic. I wasn't expected to graduate from high school but did with my graduating class of 2006. I look around and see the difference I have made with the fact I was the first autistic person to enter my school district and to be in an actual classroom. After graduating from high school most people didn't expect me to get a college degree... Well guess what, I'm excited to say I have an Associate in Arts Degree and will continue pursuing a higher education. To be loved and understood are two big parts of life for people with forms of autism from slight to severe, which I am very happy to know I have the best of each. Thank you, Carole for making such a difference in my life.

Love

Paul

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Carole K.
Carole K8 years ago

I am a retired early childhood special education teacher; it was my distinct privilege & honor to serve children & families affected by autism for more than 30 years. I noticed that some of the other comments posted here also come from therapists & other service providers. While I would not want to detract from the beautiful tribute written in memorial of Clara Park, I would like to direct interested readers to another inspirational source as well; & that is the contributions of author Temple Grandin, an autistic person herself, who wrote the book:
Thinking in Pictures- And Other Reports from My Life with Autism, Vintage Books/Random House,1995. Ms. Grandin holds a Ph.D. in animal science & is currently an associate professor @ Colorado State University. She continues to be a strong activist in the field of autism awareness & research to this day. I found her insights to be very valuable in working with autistic children & families & I often recommended her numerous contributions to parents. I must say that in more than 30 yrs as an ECSE teacher, I never saw a "refrigerator parent"! On the contrary, these parents are heroic & awesomely inspiring as they meet daily challenges about which most people haven't the vaguest clue. Temple Grandin's book dedication sited above reads: " I dedicate this book to my mother. Her love, dedication, and insight enabled me to succeed." Indeed, the last word is still love & always will be. Thanks for th

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