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3.0
United in Autism: Finding Strength Inside the Spectrum
ByPublisher Description
Julie Hornok brings together thirty inspiring and heartfelt stories from parents raising children from all places on the spectrum and from all corners of the world. These mothers and fathers have experienced some of the worst of what this disorder can do, but in seeking help, they found it...and more. Now they pay it forward by sharing their accounts and giving back to the autism community. United in Autism: Finding Strength inside the Spectrum offers understanding, comfort and hope as well as global allies and strength to those who feel alone. Includes a forward by Dr. Temple Grandin.
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Meet readers like you in the Fable For You feed, designed to build bookish communitiesUnited in Autism: Finding Strength Inside the Spectrum Reviews
3.0
“DNF
In the description of United in Autism it says: "Each parent of a child with autism has felt the suffocating isolation autism often brings and has come out of that aloneness by seeking out other autism parents." This sounded great to me. I was looking forward to reading about other parents and their autism journey. To try and get a glimpse into where others have been and where they are now. There is so much unknown to having a child with special needs that it is so helpful to find that connection with other parents who have already been there. But that is not what United in Autism is. Almost every story I read seemed to tell of a tragic, heartbreaking, life - for the parent mostly but also for the child with autism. This horrible thing (autism) happened to them and now how will they ever go on with their lives? There was a lack of discretion and respect shown to the actually autistic person. How would your son or daughter feel if they knew the things were writing about them for the whole world to read. Things like:
"something wrong with my son"
"he was severely autistic. I sobbed uncontrollably"
"my husband felt bad for Jack, but I just felt bad for myself"
"An IEP meant there was something so wrong with my child a team of experts must figure out how to help him succeed"
"a mother is only as well as her sickest child"
"since Matt looked normal...."
"we will fix our son"
"I took him from doctor to doctor hoping for a diagnosis of anything but autism. I had to come to terms that it was not about me, it was about my son...and he desperately needed my help" (almost but not quite)
"it was the worst day of my life" (diagnosis day)
And these quotes were only from the first half of the book because that is only as far as I could get. Then there was countless references to ABA, Autism Speaks, and then (and this is where I called it quits) an organization called TACA which stands for Talk About Curing Autism and another one called DAN which stands for Defeat Autism Now. Just typing those makes my blood boil and tears spring to my eyes. MY SON DOESN'T NEED TO BE CURED AND HIS AUTISM DOESN'T NEED TO BE DEFEATED. And by the way, there IS no such thing as "curing" autism. It is a lifelong neurological developmental disability. It does not go away and it can not be cured. So buckle up parents, you're in this for the long haul. Wouldn't it be better to just love the amazing, unique, child that is sitting right in front of you instead of trying to cure or change them!?!?!
The only defense I could maybe maybe maybe possibly give to these parents is that I don't know the "severity" of their child's autism. I don't know how difficult or challenging behaviors are, how little sleep they are getting, etc. But I do know that no amount of wishing or self pitying in a book, or sharing your child's worst moments for the world, is going to change your circumstance. No matter how "bad" it is or how challenging it is, you are disrespecting your child. How would you feel if someone felt it was their right to share about every time you were a burden to someone else, or to even call you or imply that you are a burden, or every time you reacted "wrong", or every time you didn't fit in. They do not deserved to be treated with the lack of dignity that I feel like these parents displayed. It is infuriating and heartbreaking to me.
I am disgusted that this book was ever published, that people think there is a place for this type of book. And I just don't know what to think about the fact that the foreword was done by Temple Grandin. It's just really a shame because while I could sometimes maybe see where parents were coming from and what they may have been trying to say, it was just all wrong. And unfortunately there are parents out there with newly diagnosed children or who don't yet know there is another side to having a child with autism who will pick up this book and feel like this is how it is supposed to be.
One more quote: "We are normal people who just want normal lives. Our responses aren't always right. We are human." Yes. The parents featured in this book are human. I could understand the feelings they were trying to convey in writing their stories. They are entitled to their feelings whatever they may be. They are allowed to say when it is hard to be a parent of a special needs child. But what I can't get behind and what is not ok, is making your child your tragedy and displaying that for the world. Shame on you, Julie Hornok and shame on you parents.
There were two stories that I read that all of the above did not apply to. These parents were respectful and loving and celebrated who their children are. Hopefully, other parents reading this book will notice the difference in tone and perspective (pages 45 and 86). From Nano's story on page 86: "I realized for the first time there was nothing wrong with Nano; he was just different. I stopped trying to fix him and began to love him exactly as he was." YES YES YES! More of this please!!!!!!! This is what I thought I was going to be reading.
*Edited to add: I've done a bit of research into TACA and found that they have recently changed their name to The Autism Community in Action. The have not changed their programs or philosophies which after reading about them I think they are a positive resource. On the other hand, DAN is as horrible as it sounds and the program has actually been discontinued.”
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