A Rose by Any Other Name . . .

LoneStarEveryone knows that becoming a parent means becoming a clearinghouse for all types of advice – some good, some horrendous, but almost all well-intentioned in nature. But no one told me that becoming an autism parent meant that I would be walking around with a target on my back. What used to be a simple trip to the grocery store turns into an anxiety-ridden attempt to get in and out as quickly as possible, a la “Supermarket Sweep” with a screaming Flash Gordon-esque tiny person, the entire time keenly aware of the judging sets of eyes lurking in every aisle. People have often unwelcome tidbits to share when they see your child flailing on the floor of Target or running around tables at a restaurant, and, even if they keep their mouths shut, their silently judgmental eyes speak volumes. But social media has taken this judgment to a new level.

Being an outspoken advocate for my child, and one who believes that her condition was not only preventable but also treatable, somehow opens me up to scrutiny and criticism. I’ll gladly accept that burden. However, when you question any parent who believes in recovery, you are essentially questioning me. And since I am my daughter’s only voice, you are questioning HER. I simply won’t stand for that.

As we all know, pro-vaccine voices have “uncovered evidence” that Jenny McCarthy has changed her perspective on vaccine toxicity and that her son never had autism. These baseless allegations spread through Facebook faster than whooping cough in the vaccinated community, and those who implored vaccine refusers to “do their research” didn’t bother doing a bit of their own. The blog post (not even a news piece or data-driven article) was posted by several of my “friends” (since unfriended) with their added captions ranging from “moron” to “lol . . . this is why people shouldn’t take medical advice from Playmates.” One “friend” even shared the article on another’s wall saying “why celebs need to be careful with their ‘activism du jour.’” That one was especially harsh.

red roseIn light of all of this bullshit (and let’s call a spade a spade . . . it was bullshit), I have to ask . . . What is it about autism, specifically, which allows people outside of the “community” to feel entitled to question the diagnosis and the chosen treatment? If I had announced that my child had leukemia, no one would EVER DARE post offensive blogs about faked leukemia diagnoses or call our chosen treatment irresponsible or unsafe or ignorant.

These people, the same groups who call out for positive thoughts or prayers each time their kid gets a cold, haven’t the first clue what autism is about. They certainly don’t get the idea of comorbid conditions, and they definitely don’t stay up until the crack of dawn interpreting MTHFR mutations and Googling about lab results, looking for a level that happens to be .001 outside of the “norm.” I do. Biomed parents do. Homeopathy parents do. Brain Balance parents do. MNRI parents do.

Guess what else they do? They consult doctors with degrees and a wealth of experience and education specifically in autism (oftentimes these doctors are also autism parents themselves). Yet here I am, and here my fellow parents are, constantly on the defensive because people who have little to no personal experience with autism, and even less knowledge about the vast array of symptoms, feel it’s somehow appropriate to lambaste strangers about their recovered kids.

Let me be clear: it’s OFFENSIVE to doubt autism simply because it doesn’t fit your cookie cutter idea of what autism looks like. It’s OFFENSIVE to imply an autism parent is exaggerating their situation for attention, or because you believe it’s some sort of fad. Autism is a medical condition. Moreover, autism is a symptom of a spectrum of underlying conditions. As with any other medical condition, it is treatable. We, like many parents before us, have spent countless hours consulting with doctors across the nation, attending conferences about innovative and effective treatments, reading stacks of books, and poring over volumes of data. WE KNOW OUR KIDS. Children can and do recover; our children WILL recover. But, recovery doesn’t dismiss the presence of the disorder(s) in the first place. If a kid experiences cancer remission, would you bother asking if that kid ever really had a disease in the first place? Doubtful.

So unless you’re at every appointment and therapy session and midnight waking and poop-smearing fest of every child on the spectrum, don’t make asinine assumptions about it.It isn’t funny, you aren’t being clever, and you aren’t proving any point.  Most importantly, you aren’t being supportive of anyone.

I don’t expect people to agree with my choices, but my child and I deserve respect and medical autonomy. PERIOD.

With love,

~Lone Star

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19 Responses to A Rose by Any Other Name . . .

  1. As the adoptive parent of 4 children who ALL turned out to have special needs, unbeknownst to us at the time of adoption–autism is not the only arena where people who know nothing weigh in with inane and idiotic advice and comments. ADHD is another area where people feel quite comfortable making judgements to your child’s face(!) no less, about their condition and what it really is or how it should be treated. With 15 incidences of 10 different dx’s and 16 years of homeschooling, I am pretty sure I have done or nailed most of the treatments etc out there regarding my children’s diagnosis.
    It is because of media bias in these areas of information, as well as suppositions based on personal judgement– that I have chosen the hermitage tack and find it far more beneficial to remove myself from the public arena-for my own sanity. Since my most severe child’s manifest of autism is at the bottom on the functional/behavioral spectrum, Thank You DPT, I can’t go out anymore anyway to engage these know-nothings.

  2. LeighJane says:

    Hi, Im a mum in the UK with a daughter about to give birth soon.
    She was just about to have her 6th ultrasound scan, even though they’re happy with baby’s weight. I just found this website which shocked and upset me.

    I had no idea about this and she’s cancelling the 6th scan tomorrow.
    What is going on in the world today? Why cant we just have babies like nature intended?
    Thank you for Thinking Moms Revolution. Its so great to read such gutsy stories of strength, love and hope.
    Its such a pity its needed..xxxxx

  3. Julie says:

    Fabulous, spot on article! One that I want to copy and mail to family members that still don’t get it! Thank you!

  4. MelissaD says:

    You are right on the mark! I also was fed up with the “sharing” of the FALSE Jenny story and set people straight on a “friend”s post telling them where he was diagnosed and sharing GenRescue’s site. I was so annoyed with people who badmouthed her who don’t have a freakin’ clue about how knowledgeable she is, and how much most autism parents research and know. It is infuriating. I ended up losing a “friend,” but it was worth it if even one person was led to Generation Rescue…plus I found a new “friend” who thinks like we do…and you all are worth your weight in gold!

  5. Katherine P says:

    Thank you for writing about this – so true!!

  6. Amy says:

    Thank you for voicing what so many of us experience and feel.

  7. nhokkanen says:

    Living with autism has paradoxically also taught me how many neurotypicals process information. From silo thinking and status quo maintenance to ostracizing groupthink and mob mentality. At our base, information acceptance is catalyzed by primal drives, particularly fear.

    Working to treat autism’s comorbid medical conditions compelled me to seek honest, transparent science and taught me to recognize fabrications borne of expedience or faulty life filters. It’s crucial to our kids’ health that we recognize time wasters — pharma trolls, huffy healthcare workers, paranoiacs and perpetual negatives — and focus on maintaining information exchanges with altruistic folks working toward common goals of recovery and prevention.

  8. Pammypies says:

    I have had one of my son’s teachers (Pre K) stand there and tell me that the gluten/caseine free diet does not work. We tried it anyway. We purposely did not tell anyone so that we could see of THEY noticed. ALL my son’s therapists and teachers came literally running down the hallway asking me what we’ve done and told me to keep on doing it. Even Miss Pre K chimed in. When I told her about the diet, her chin hit the floor.

    We learned a long time ago that you gotta do what you gotta do regardless of what anyone else thinks, says or does. It’s YOUR child(ren). YOU do what works!

  9. Pammypies says:


  10. andrea says:

    You took the words right from my heart! Amazing job, Lone Star!!

  11. Adrianne Clarke says:

    Right on target…totally agree! Great article…thanks

  12. Thinking Mom says:

    Agreed! Posts like these help me show others through social media what it’s really like and how it really feels to partake in the ASD world. As fellow Moms struggling to heal our kids because let’s face it, this is an issue of life or death, we need to support and stick together!
    Thanks Lone Star!

  13. Danielle Steffe says:

    Thank God for this post!!! I have been wrangling with ignorant people for weeks over this. This is spot on!!! Thank you

  14. claire says:

    I LOVE THIS!!! couldn’t of said it better. I wrote a blog post about this as well but you are so spot on!! Its incredibly disrespectful some of the comments other parents can make about our choices. People make judgments out of pure ignorance. Thank you for this!!

  15. Gilded Thinker says:

    This is amazing, Lone Star! Thank you for writing such a great blog.

  16. Erica says:

    Exactly! I can’t tell you the number of emails I have received over the years telling me my son never had autism, I must be mistaken, yadayada. And the hate mail, even from parents with children with autism just crushed me. I was trying to help by sharing our journey! But we were at the forefront of recovery 8 years ago. It also makes me crazy every time one of my friends on FB posts that stupid meme about “kids with autism aren’t different, or sick. They’re just unique.” Pardon my language but have they ever ?$&! lived with a child with autism?! My child was freaking sicker than sick! Lastly, if I hear I about “university of google” one more time!!! I can’t tell you the number of times we have been at the doctor’s office and s/he whipped out a phone or got a laptop to “google” what I was explaining! Thank you for this article. It needed to be said!

  17. Lindy C says:

    Absolutely LOVE this!!!!!!!!!! I could not agree more!!!!!!!!! My daughter is on the road to recovery and if someone EVER tries telling me that “she probably did not have autism in the first place”…things may get ugly! I also find those thought processes so incredibly offensive and find that it completely dismisses all the hard work that she and our family have done to get her healed and I will NOT have that…EVER!!!!!!!!!! Thanks for reading my mind;)

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