“If it walks like a duck, quacks like a duck, looks like a duck, it must be a duck”
– James Whitcomb Riley
Ever since our book, “The Thinking Moms’ Revolution: Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue Their Children” hit the bookshelves, I have had a number of people question my involvement.
“I didn’t know Jaz was autistic?
“If Jaz isn’t austistic, why did you contribute to the TMR book?”
“What does Jaz have in common with the other kids?”
First off, no, my daughter is not diagnosed with autism. I don’t say this in the “I am in denial and am offended by the suggestion” sort of way, but rather in the “nope, not autism,but….” sort of way.
If you go by what Wikipedia says, “Autism is a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior.” It goes on to say that “Autism has a strong genetic basis, although the genetics of autism are complex and it is unclear whether ASD is explained more by rare mutations, or by rare combinations of common genetic variants. In rare cases, autism is strongly associated with agents that cause birth defects. Controversies surround other proposed environmental causes, such as heavy metals, pesticides or childhood vaccines; the vaccine hypotheses are biologically implausible and lack convincing scientific evidence”.
Note to self – stop thinking that Wikipedia is the end all, be all of accurate information.
Ok – back to my point…even though Wikipedia only opts to mention impaired social interaction, poor communication and repetitive behaviors, we are smart enough to know that that barely begins to describe autism. Although not all kids have the same symptomology, as you know, many are also dealing with ADHD, seizure disorder, gross motor delays, fine motor delays, sensory processing issues, auditory processing delays, anxiety disorder, food allergies/sensitivities, heavy metal overload, asthma, digestive issue, etcetera, etcetera, etcetera.
So, no. My daughter is not diagnosed with autism, but, at one point or another, she has been diagnosed with every single one of the ailments that I listed above. Every. Single. One. Does this make her a duck? Meh. Doesn’t really matter much if you ask me. What does matter is that regardless of the label, she shares common ground with many kids on the spectrum, and I share so many concerns that parents of autistic children have.
If you read the book, I speak in my chapter about the moment I realized I was not alone. I would bet my last dollar that each person reading this knows at least one person who needs to know that THEY are not alone. Maybe their child is floating around undiagnosed or differently diagnosed. Maybe they can’t find the right place to find support because their child is the square peg that does not fit into the round hole. Maybe, just maybe, their child is a duck in disguise.
I am here to tell you LOUD and CLEAR that TMR is for everyone. Did you hear me? EVERYONE! Not only can we offer support to all sorts of folks with all sorts of diagnosis, we WANT to. So, don’t be shy about passing us along. Don’t think that only those with autism can identify with us or vice versa. Go ahead, send us to a friend and say, “I know your child does not have autism, but….”
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I, too, am technically not an autism mom, but my child has many of the same underlying medical issues and physical symptoms as kids with ASD diagnoses. I identify strongly with Thinking Moms because we are all on the same journey to heal our children. So glad for your voice!
my child is not vaccinated or medicated and has no allegies or whatsoever but i bought the book to create awareness in my network and hopefully some of them dare to move further to action.
My son is like your daughter, Saint. We found hope, support, and connection with other families dealing with diagnosed ASD issues and it was through their input that I found our lab work is so very, very similar to theirs. Speak on, Saint. I’m listening and so are a lot of other mommas.
Jen, my compliments on the way you responded to the individuals who questioned your inclusion in the group. You handled the controversy remarkably well. The people who are opposed to the recognition of symptoms, without the actual diagnosis, obviously don’t understand what Autism-Beyond the Spectrum actually means.
I so admire your enviable ability to stay cool. By the time any reasonable person finishes reading your article they will find their viewpoint has changed.
Ultimately, does it matter what other people think about us? Our family and good friends know what’s real and what issues we face. It’s during our darkest moments that we must concentrate on the light.
Oh I am laughing at Wikipedia…go read what it says about Generation Rescue…your blood will boil and your eyes pop… Wikipedia is sadly riddled with misinformation and opinions galore.
I am so glad to see someone else! While my youngest was diagnosed with ASD, my oldest son has Dyspraxia, Tourette Syndrome, OCD, ADHD, SPD, etc. etc. etc., but not Autism, He is the main reason I began our long road that led me on a path along with thousands and thousands of other like minded mothers. It is this road that led me here to TMR. Thanks for sharing to let those of us who might not have an autistic child know that we are still welcomed here!
I would bring my son back for further diagnosis. I don’t understand how your son can have all of those things and NOT be on the spectrum. I am raising an HFA child and I applaud everyone on here for…
1) Have a clear understanding of Autsim
2) Not allowing the lack of a diagnosis from blinding you to what is happening to all of our children
3) Being proactive about Autism Awareness and prevention within your own families
I absolutely think this is a genetic condition. Once those genes begin to express themselves, one’s environment is going to have the largest impact on how debilitating the SPD issues can be over a person’s life. Do you think people were able to deal with the sensory issues better in the past? Such as before the use of electricity became common place? Darker is better when a person is sensitive to lights. I often wonder if Autism was as devastating to people in the past who didn’t have to contend with the high level of toxins in our food, cleaning chemicals, medications, and outside environment.
I love this article. It says clearly something I have been feeling for some time. The issues this website and group battles are simply issues of our childrens health and happiness. That battle isnt limited by the labels placed around the health problems. My son and my daughter have better lives because their mother cared enough about the risks they faced. They don’t have autism. But they had their own challenges and faced risks and those challenges and risks were made manageable by the effort and understanding at the heart of TMR.
(Oh and I love the duck/cow image too….)
I know that shopping cart:) Following the Feingold diet sure help take many of those things out of my family’s cart. http://www.feingold.org
Thanks Saint. I just finished reading the book yesterday. It is a great hope-filled and inspiring account. I do not have children who have struggled in this way, but I feel compelled to help new parents understand the pitfalls of our highly medicated processed instant society which seems destined to throw them into an enormous river (autism) when they were only trying to miss stepping in a puddle (childhood illnesses).