Here is the second installment of my “Books About Autism” series. Today’s books are parent memoirs. They are all written by parents of autistic children; describing their parenting journey and the emotional ups and downs that come along with it.
If you want to read more book reviews specifically on the topic of autism, check out my previous post:
Books About Autism: For (Neurotypical) Kids
If you are not enmeshed in the world of autism, you may be surprised to hear that parent memoirs are a controversial subject. There are many autistic adults who feel that parent memoirs are unhelpful at best, and exploitive at worst, because they focus so much on the parent’s experience that they neglect to share the child’s experience. Others believe that no one should attempt to speak for another person, even a parent speaking for their own child (So, almost the opposite complaint as the first). Others find parent memoirs tasteless because they feel that it’s attention-seeking: just a parent trying to get their 15 minutes of fame at the expense of letting people be voyeurs into their child’s life. Yup. It’s a real kettle of fish.
I can see it from both sides. I am a parent of an autistic child. On one hand, I have felt immense isolation on this journey and have fallen into depression from the lack of understanding and community. It is hard to go it alone day after day when no one understands your struggle. So for that reason, I am so grateful for other autism parents that write about their experiences. It gives me someone to relate to, some comradery, some understanding, and even some hope as I read about the victories others have had and the ways they have come through hard times stronger.
On the other hand, I absolutely agree that some parents have taken it way too far. Some people, in their pain, have vilified autism so much that they create more stigma than they alleviate. I think this is a misuse of their story. The controversy around parent memoirs has caused me to think carefully about whose voices I seek out, and about what information I share myself.
If you are a long-time reader here, you may have noticed that I never say my children’s names and never post photos of their faces. This is intentional. I have even had to delete very sweet comments from my social media because the person knew us personally and referred to one of my kids by name. I do my very best to respect my children’s privacy, because I am committed to letting them just be kids.
When I seek out support in the form of parent memoirs, I am looking for authors who share these values. Not many parent authors have gone as far as I do (never saying their child’s name), but I look for parents who treat their children with respect. I look for parents who are committed to saying good things about their child, and are advocating for a better world for them. I seek out parents who use their platform to encourage other parents and give them hope, instead of seeking attention and dragging others down into despair.
So these books that I share today are ones that fit that description. They are by parent authors that love their children, treat them with respect, speak a message of hope, and are committed to creating a better future for their child and others like them.
For the Love of Autism: Stories of Love, Awareness, and Acceptance on the Spectrum
by Tamika Lechee Morales & Others
This book technically isn’t just one memoir–it’s several. This book is a compilation of stories written by all sorts of authors: autistic adults, parents, experts, and a few well-known autistic individuals (Dr. Temple Grandin, and Dr. Kerry Mangro, to be specific). However, since the majority of the stories are by parents, I have included this book in this collection.
Each chapter is written by a different author, telling their personal autism story and highlighting something important to them on the subject of autism. Some share their experience of starting their own autism organization: including parent support networks, a driving school for individuals on the spectrum, and a tech quality assurance company that hires autistic employees specifically for their detail-oriented strengths. Each chapter ends with a love letter written to the autistic child (or in the case of an autistic adult, to autism itself), highlighting the good things that autism has brought into their lives.
This book has been the hardest of all to critique, since it is written by so many people. Some authors I really connected with, others I didn’t. Some authors I agreed with, others I didn’t. Overall, this book ended up balancing itself in my mind: not standing out as good or bad. Perhaps it is safe to say that it may not be the right book for an autism parent who is “seasoned.” I just don’t think you’ll get much out of it.
That said, if you are new to the world of autism, perhaps with a newly-diagnosed child or grandchild, this may be a good first book for you. You will probably find, as I did, that you connect to some authors more than others. This will point you in the right direction of whose books to buy and whose social media feeds to follow as you continue on your autism parenting journey.
P.S. This book comes with a content warning of swearing/strong language in one chapter.
What Color is Monday? How Autism Changed One Family for the Better
By Carrie Cariello
I picked up What Color is Monday? because Carrie’s blog is one of the first and one of the best blogs I discovered when autism first came into my life. I love her writing. She is real, and she is wickedly funny in her own under-stated way. I have been following Carrie’s writing for years, and her stories about her son Jack have given me hope for the future in a way that nothing else has. Jack is now 18 years old and attending an adaptive college program. College! I have become a huge fan of Jack & his family, cheering them on every step of the way, and celebrating their victories with them from thousands of miles (and a border) away.
This book, however, was written when Jack was about 8 years old. Mom Carrie did not know the future then. She didn’t know then that he would survive puberty and high school and his first steps into adulthood. She didn’t know that she would survive it either. Her book is about the unknown, and finding peace in all the uncertainty.
As I read through this book, the thing that struck me the most was how this book wasn’t just about Jack. Carrie gives a great deal of time to her husband and her other children, honoring them in their own journeys with their son/brother as well. And ultimately, this book is about how Carrie herself has adapted and changed to become the mother she needed to be for her son.
This book is a nice read, and lighter than the others. Carrie likes to make people smile. Keep in mind that it is older, and you may find that you aren’t “learning” much from it, now that autism information is so readily available. Yet, I can’t help but say, that what it lacks in information/educational value, it makes up for in heart. And if you are looking for an autism memoir that will make you smile instead of cry, this is a good one!
Carrie Cariello’s Blog: Carrie Cariello
Aching Joy: Following God Through the Land of Unanswered Prayer
By Jason Hague
Non-Fiction, Christian Living
This is a memoir with a religious spin. I have categorized it as “Christian Living” above because the theme of the book is unanswered prayer. The author Jason once prayed continually for his son’s healing from autism, but in the years and years that have followed, he has had to figure out how you move forward and live joyfully when the thing you pray for never comes. He addresses this book to anyone who is experiencing unanswered prayer, however the personal story he weaves throughout the theology is about his fatherhood journey with his autistic son.
Jason is a preacher, something that is very evident in the writing style. His writing is definitely the most polished of all the books I have shared today, and is full of well thought out “earworms” that stay with you after reading.
I enjoyed this read because it comes from a father, offering a male parent perspective on the journey of raising an autistic child. There are very few father voices in the parent memoir category. You are much more likely to find male voices in the scientific study category. Hague himself addresses this in the book, saying that many fathers want to fix things, and autism is one of those things that cannot be fixed. It can only be experienced and felt. This has been a large part of his own struggle: coming to acceptance.
I also appreciate his honesty when it comes to the rabbit trails parents can desperately run down in search of answers. He admits to looking into theories that have been proven false, and to trying diets, etc… in an attempt to find “the answer,” only to have his hopes raised and dashed again. This is a subject that causes a lot of parent advocates shame. They don’t like admitting that they didn’t accept the diagnosis right away, for fear that people will think that they did not accept their child. I think it was brave and kind of Jason to add this very authentic part of his story, so that others don’t feel guilty for their own thoughts during such an emotionally vulnerable time.
This is the one for you if you are looking for a Christian perspective on autism.
Jason Hague’s Blog: Faith. Fatherhood. Autism.
Forever Boy: A Mother’s Memoir of Autism and Finding Joy
By Kate Swenson
This list would not be complete without mentioning Forever Boy once again. I wrote a longer review of this book when it was first released, which you can read here: Forever Boy.
I like Forever Boy for many reasons. One, it is very modern and up-to-date. Published in 2022, it is the newest book on this list today. Because of that, it is the most current in terms of terminology, mentioning up-to-date services and support devices, and addressing the challenge of this digital age where you can be attacked by strangers on the internet for talking about your autism parenting struggles.
Another reason that I love this book is that, while the writing is good, the story is raw. There is no hiding behind niceties here. Kate speaks openly about the emotional journey she has been on; describing her tears, stresses, worries, and roadblocks in a completely unashamed way. For example, her marriage broke down and ended in divorce. (Like approx. 80-87% of marriages do when a special needs child enters the family) She is very reflective on the reasons why, and honest about the enormous pressure navigating the world of special needs has on a relationship.
Mostly, I like this book best because, of all the parent memoirs I have read, this one felt like it was telling my story. Somehow, it felt like Kate was in my mind, and writing the words in my heart. Her pain, her determination, her strength, and her victories, all parallel my own so much that I cried ugly tears on nearly every page.
I recommend this one to parents who are feeling completely alone, isolated, and misunderstood. I breathed the biggest sigh of relief while reading this book, knowing that someone else out there truly “gets it.” If you are in desperate need of a friend who gets you, this is the book for you.
Kate Swenson’s Blog: Finding Cooper’s Voice
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