Not Otherwise Specified

Originally published 3/12/12

Autism is a sick, twisted bowl of Alphabet Soup….a hodgepodge of acronyms for therapies, supplements, treatments, and lab tests.  It’s like a second language, actually.  You become fluent.   Many of you are familiar with the good old “NOS” {Not Otherwise Specified) acronym.  My boys were diagnosed with Pervasive Developmental Disorder, Not Otherwise Specified.  PDD-NOS… kids who don’t fit the criteria for a classic Autism diagnosis.

Autism: Other.

What the hell does that mean, anyway?  I guess it doesn’t really matter since the DSM is rewriting the criteria and it will no longer be a diagnosis.  FANTASTIC!!  We’re CURED!! Why didn’t they think of this years ago??!!

{{insert eye roll here}}

Don’t like the way the numbers look?  Scared you can’t hide an epidemic anymore?  No worries, just change shit around and eliminate a diagnosis here and there.  Voila! No more epidemic!   Nothing to see here, folks!  Move along….and be sure you get your shots on time….and don’t forget to bring your Tylenol!!


“Autism” isn’t a psychological disorder and shouldn’t even be in the DSM (the bible of PSYCHIATRIC diagnosis).  AUTISM IS A MEDICAL CONDITION.  Faulty metabolism, heavy metal and toxic burdens, food allergies,  auto-immune dysfunction, viral infections, parasites, yeast overgrowth and GI issues to name a few.

Hmmm…I guess if I had all of these issues and no one would listen to me, could understand my pain or help treat my illness, I’d look pretty out of control too.

Let’s take a moment and discuss a few other things that come along with the diagnosis for me that were “Not Otherwise Specified”, shall we?

  • STRESS-NOS:  A free floating, never ending feeling of anxiety and worry characterized by grey hair, dark circles under the eyes, and early onset of wrinkles.  May be triggered by anything and everything autism related.
  • BROKE-NOS:  The sucking and draining of any and all financial means of security (ie savings, 401Ks, credit cards, pensions, home equity, etc) often brought about by the inadequate care and treatment provided to children with the aforementioned PDD-NOS diagnosis.  A list of therapies, treatments, and supplements, and labs not covered by insurance but necessary for proper care and treatment will aid you in depleting your last dime.  It will be worth every penny, but be prepared to live in debt and worry about money until you take your last breath.
  • ANTI SOCIAL TENDENCIES-NOS:  The inability to relate to many “neurotypical” folks and the endless stream of inconsequential drivel that comes from their mouths and the ignorance that seeps from their stares and whispers.  This often leads to limited contact outside of the realm of people that truly get it.  Plus, there’s no money for bail (see BROKE-NOS).
  • ANGER-NOS:    A persistent feeling of rage and disgust at the establishment and powers that be for not only CAUSING said epidemic, but for covering it up, attempting to silence doctors and researchers,  and basically making parents who KNOW what happened to their children look like irrational, crazy radicals looking for something to blame for inherent faulty genes.  This anger, however, will come in handy and can be utilized as fuel during IEP meetings, “well care” visits, and your 1,648th phone call to the idiots at the insurance company.
  • DIVORCE-NOS:  For many, Autism leads to divorce.  The factors behind this are varied.  Some cases it’s the spouse can’t handle the stress.  For others, the fighting over financial burdens become too much.  There are also cases where Autism brings about an extreme drop in BTI (Bullshit Tolerance Index).   No time to worry about anyone else or deal with nonsense.  Must Recover Children.

I wish I could embrace Autism….to accept it and look at it as a gift.  Who knows, it would probably make things a bit easier. But I can’t…because it’s NOT.

My Boys are the gifts.  Autism is certainly NOT.  It’s not welcome in my home.  It can’t steal the life my kids were supposed to have from them.  I won’t let it.  Anger is a gift…it’s what drives me and keeps me going.  Complacency is evil. This has not happened to a generation of children in vain.  Embrace it.  Channel it.  Use it to get shit done.  Kick in doors.  Bombard inboxes.  Scream from the rooftops.  Find fellow Thinkers.  There’s an Army of us and we are growing by the minute.

There are a few other NOSs that came along in this package deal, but they will really help you get through…..

  • FAMILY-NOS: A group of strangers that become blood. Like minded individuals that hold you up, offer support and guidance, send you supplements to try, make you laugh until you want to pee yourself, make you smile through your tears, and are faster and more accurate at providing answers to questions than Google.
  • CLARITY-NOS: Once you begin to learn about the true story of Autism and it’s origins, your eyes will begin to open. You will see what is really being done to our children, food, medicine, air, water, etc. This intake of information will initially wreck your world, but bring you an awareness of what’s happening and the fire to do something about it.
  • COMMUNITY-NOS: A village of people that truly “get it”. They walk in your shoes everyday. They understand you when you start spewing acronyms. They can relate to dealing with shit (literally and figuratively). They have been through the ringer and can offer you advice and tips on anything from Asthma to Zinc Deficiency. They travel from all across the country and the globe to meet up at conferences, share ideas, learn new things, and unwind with people that understand them.

OK Autism, I’ll take your Alphabet Soup and all the other shit that wasn’t specified.  I have no choice in that.  But I do have a choice not to sit down and take this all with a grain of salt….


I choose to do something about it.  To bring my kids out of Autism and show the world that it can be done and is being done every day.  To bring like minded people together. To support others going through the same. To inform and educate people about what has happened and is happening to a generation of children. To make change in our government and medical system.

One day soon, I’ll add another NOS that the mainstream failed to tell us about to the list….


Never stop, Thinkers! Don’t stop FIGHTING. Don’t stop HOPING. Don’t stop BELIEVING.


For more blogs by Poppy, click HERE

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41 Responses to Not Otherwise Specified

  1. Mica says:

    Holy Moly – I FOUND YOU!!! Yippee! Check out my blog – you’ve motivated me for sure.

    And I hear the DSM people get paid for their votes by the drug companies (nope, not kidding). Good think the good ‘ole folks at Zoloft get a vote. I was concerned for their shareholders well-being. MF’ers.

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  3. celeste says:

    Willie is PDD-NOS. Way to speak on it Poppy. You amaze me. Fantastic expression of the TRUTH. I would love to take you on a vacation, but (see Broke NOS.)

    Second favorite part… Bullshit Tolerance Index. I swear to g-d I was ROLLIN’ !

  4. Nour Sharif says:

    Thank you so much for being a truth teller ..this reminds me of Michael Moore ..lets write to him and see if he will tell our story ..I spent 2 hours on the phone today with my health insurance they cover nothing but they keep raising the rates 25% every year …they are robbing us every penny , our pediatricians posioned our children ..they all drive a mercedes…the Big Pharma took the profits and we are all fucked …they damaged little children and got away with it ..I am angry like you and I am on your team ..I will dedicate my life to fixing this and holding these people accountable …we have been royaly screwed ..financially , emotionaly and health wise …thank you for being our voice I am too tired to write myself ..once I recover my son I shall write every day ..

  5. Kelly says:

    Instant classic TMR. Thanks Poppy for making me laugh, cry and get pissed off all at once. All of which make my wrinkles every more defined!

  6. Donna says:

    Beautiful Poppy and so spot on! Both of my boys are affected….eldest (16) dx with PDD-NOS after 15 minutes with a neurologist who advised us “not to go down the long road of unnecessary medical testing…just take him home and love him.” Feeling hopeless and desperate, I joined the ranks of all us “autism moms” who have become adept at PMR-NOS (Pervasive Medical Research). After years of expertly navigating PubMed, etc., i have sadly learned that A: Doc’s consistently talk out both sides of mouth; B: They contradict one another in published studies; C: Their opinions widely differ; D: They know little to nothing about underlying autoimmune, immune, metabolic medical conditions that lead to psychiatric, cognitive, behavioral and neurological conditions and in fact believe they are distinct…duh! E: Rarely admit autism, with it’s myriad of issues is out of their scope, so sadly refer parents/patients to psychiatrists and developmental pediatrician’s without a PROPER WORK UP FIRST to rule out common medical conditions known to cause the final behavioral label “autism.” Rett syndrome ( mutations in the methl-CpG-binding protein 2 (MeCP2) gene and Fragile X as just 2 of dozen’s of examples! Worse yet, some disorders known to cause autism are simply a matter of metabolic disturbances with missing enzymes that, when replaced, eliminate the autism symptoms. But alas, as usual, MOM had to begin the push, cajole and finally manipulate doc’s for proper medical testing which should be a BASIC step when a child is first dx with ANY DSM label! Why does this continue? My heart aches for the thousand’s of newly dx children and their families whose cans have been kicked down the deleterious and dead-end psychiatric path as their only hope.

  7. Adrianne says:

    Great post!! You said all I’m feeling especially the being very angry part. Xoxoxo

  8. Kerri Rivera says:

    So, I can´t stop crying after reading this…I am always swimming upstream like the salmon. And here I read what I feel…with the like minded thinkers. Thank you and congratulations. You are so eloquent.

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  10. I absolutely love this, all of it. I am angry along with you. I want some shit specified along with you. I am intelligent, and knowledgeable, and am made to look like an irrational freak along with you. Just tonight I told my husband I would lose my mind if I couldn’t read other people’s stories about dealing with spectrumy stuff – and then here you are.

  11. Jacque says:

    Brought tears to my eyes, beautifully written, powerful, and eye opening. Thank you for sharing.

  12. Ana Maria Abba says:

    So true true true. I really hate when other people say you have to embrace your child and accept him as he is. I do.. I just don’t and will never ACCEPT the DAMAGE done to my child. I don’t care what the label is but it is a medical condition. Would you accept diabetes and let it destroy your child – no. Same with ASD. It is treatable and preventable. Why isn’t anyone doing more to educate to stop this madness from spreading/!!!

  13. VLR says:

    Great piece, love the tone. Loving the TMR. Viva La Revolution.

  14. Cara says:

    What I wouldn’t give to see this on the front page of a very large newspaper for the world to read! I loved it – thanks for sharing how we all feel, cursing and all!!

  15. Sema says:

    Love your story , I read it after I received a phone call from my son’s teacher that he was not acting good at his computer class . I should share with my son’s teacher too . English is not my native language , so with your very touching story you are like my translater to my thoughts . Thanks again .

  16. Sabrina Stone says:

    Hilarious! And so very true. We have worked very hard at the recovery-nos….Any idea as to what they are planning with the DSM? How are they re-classifying our children?

    • Sabrina Stone says:

      Hmmm. General diagnosis of Autism Spectrum Disorder. No longer separated by nuance. Might be good….might be bad. I guess it will depend on how services are tied to the new diagnosis. We do not receive services but I hazard to guess they will tie it to whether there is, as they put it, “intellectual disability” (which could, quite frankly, apply to just about every doctor I have ever met….but that’s another story for another day).

  17. Theresa says:

    Poppy you have written what I feel every moment of every day. People who are not Autism parents do not understand. I would love to print out your Not Otherwise Specified and give it to some relatives and people, because they do not understand what my husband and I are going through with our son.

    • Poppy TMR says:

      Send them over here to Thinking Moms and let them have a read….maybe that will shake some sense into them 🙂 I’m just glad that we all have one another to lean on, I always say, “You really don’t get it until you’ve got it.”

      All the best to you and yours, Theresa! Thanks for reading xo

    • Jennifer Power says:

      I am not an autism parent and although I will never walk in your shoes, nor truly understand, I look around at the far too many children with vaccine-damage and I am appalled and frightened for my children’s children. I look forward to TMR everyday and I use what I learn to try to get through to my friends and acquaintances. I am but one of a growing number of Australians who are committed to getting the word out. Please join us on facebook at

      Also the website:

      Thank you for this excellent post. And all the others.

  18. Cathi says:

    Love this post. Now I’m off to use my anger-NOS to make calls to insurance company and school. Can’t wait for the Recover – NOS!

  19. krystilee says:

    poppy, i have 2 kids with pdd-nos in wisconsin and im pretty sure you crawled into my head and said everything i think on a daily basis without the plethora of curse words. thank you!!

  20. AgAngel4Autism says:

    Giggled our tails off @antisocial-nos..(No Bail Money) HA! SO GET IT! Bio Daddy and I were just watching Rage Against The Machine videos last night! Anger IS a gift! Thanks for starting my day off right!

  21. Renee Tagliavia Harrison says:

    once again, YEP!

  22. stacy says:

    Great post!!

    I agree with you that autism is not a disorder, but it’s in the DSM bc the therapists that treat these children are Behavioral Psychologists.

  23. Tanya says:

    Every post here is more awesome that the one before! Thanks for telling it like it is. Here’s to Recovery-NOS! Now onto the kicking and screaming.

  24. Kristin says:

    Wonderfully put!! Of course, every child we manage to save/recover will be greeted by the mainstream with BS-NOS like “they were misdiagnosed to begin with.” But the friends, family and community-NOS will know the truth, won’t we!?

  25. Allie says:

    Another day, another awesome post from the thinking moms! Beautiful job, Poppy!

  26. Saint says:

    This is wonderful Poppy. I am so honored to be your friend-nos. Love you!

  27. Susan says:

    Thanks so much for pulling all of these NOS’s together — this is a fantastic piece!

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