Why Autism Families Feel Isolated

Having a special child requires more patience, time and love than most people can imagine. With ASD, it’s not just the grandparents who don’t understand, or the neighbors’ kids who taunt, or the schools that don’t seem to have the services, it even extends to the ignorance and insensitivity of doctors and medicine in general.

Parents are told “your kid’s got PDD-NOS – you’re going to need OT, PT, S&L, ABA, ESEs… so you need to go get tested at the CDTC.”  The child neurologist makes a diagnosis, but offers little hope and no medical intervention. Allergists, gastroenterologists and dermatologists only consult about their area of concern. Even pediatricians are rarely knowledgeable enough to give advice and counsel. Worse, many physicians warn that you are wasting your time and money if you even consider an alternative treatment. So, families seek information and community on the web.

As a physician taking care of so many patients with autism, I often feel the same lonliness, isolation and even scorn as the parents whom I help. I became prompted to write this when I read an article in this month’s AAP newsletter, which is published by my professional Society, and paid for by the self-serving pharma, formula and other companies who wish to appear official by advertising in this supposedly impartial scientific periodical.

Pseudo-outbreak of pertussis
linked to specimen contamination

That’s the headline of a small story tucked inside the second page of our obscure pediatric newsletter. Ummm… where did this appear in the mainstream media??? I mean, when the outbreak was considered to be due to those irresponsible, horrible parents that won’t vaccinate their kids, it was all over the news.

You know what they found out? The germ was coming from the people at CDC who were trying to grow the specimen. THEY created the problem! It wasn’t a ‘pseudo” anything, because there was NO outbreak. Isn’t this important enough to have appeared on TV? Yo, Anderson, Drs. Gupta & Oz  – where were you on this story?

“Staff reported not wearing gloves routinely when collecting specimens or preparing vaccines, which were done in the same rooms.” I’m sorry, I have to comment here; they were testing the “cases” of whooping cough in the same place they were making the pertussis product. “In addition, sinks were not always available in exam rooms, and surfaces were not cleaned regularly with bleach… <the whooping cough germ they were using to make vaccine> was detected on many surfaces, including nurses’ laptops and exam room areas. “

It is not merely the observation that such shoddy practices could take place in our so-called state-of-the-art, highly evolved public health infrastructure that should make the reader less-than-confident that we are all protected and safe from bad cooties. It is not only that there seems to be a disconnect when such a finding comes to light and the general public is not really informed about such a grievous error.

The greatest problem that I have with this information is in the concluding statement, “The investigation and other data prompted the CDC to publish best practices for the use of PCR for pertussis diagnosis.”

That’s it? No one was fired, no managers were reprimanded? There was no retraction put out in the general media, that’s for sure. Who would that help? Then, vaccine makers and testers might be required to have unnecessary scrutiny from possible outside sources who couldn’t really understand the gravity of a real epidemic. Heaven forbid, people might not trust the system.

There are roosters guarding us chickens and explaining their actions using ‘newspeak’. Where are the right people to take notice? That’s why we feel so alone.

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4 Responses to “Why Autism Families Feel Isolated”

  1. Erwin Alber says:

    I admit to being confused.

    “Staff reported not wearing gloves routinely when collecting specimens or preparing vaccines, which were done in the same rooms.”

    Surely specimens are collected by medical staff at a medical centre, while vaccines are prepared in a vaccine manufacturing plant? Or by “preparing do you mean the vaccine is being put into the syringe? This howevr doesn’t seem to be the case, because you go on to say:

    “they were testing the “cases” of whooping cough in the same place they were making the pertussis product.”

    Surely the specimens are tested in a laboratory, not at a vaccine manufacturing plant?

    I don’t get it. Would you please explain? It would also be good to be able to read what exactly the item in the AAP newsletter said.

    Thank you!

    • Dr. Udell says:

      First, I would like to upload the article, but you have to belong to the AAP to get that. Second, I’m quoting a reporter on the story. I agree that it doesn’t make sense… but no one is denying the story of a pseudo-epidemic, which means that there was no epidemic, which is what I’m interested in, since the blame went to the wrong individuals.

  2. YG says:

    Well, they say there is a first time for everything, and here is mine. I usually agree with you in just about everything you’ve written, but not this time. I don’t agree that is the reason why autism families feel isolated. Yes, it is true that the main stream medical community has made and continues to make life difficult and one has to deal with the condescending looks if they know you are seeking “alternatives” but because we KNOW these alternatives are working and have incredible support from doctors like you and your staff, the feelings of isolation aren’t really there as much.

    Now, as for what makes us feel isolated. It’s because we are. Some years ago before I became a mom, before I even got married, I would hang out with my friends. As they started having children I would be invited to their kiddie parties or be over for an afternoon or whatever. When my daughter was born this was still the case. Later on though after we learned her diagnosis the invitations waned and then fully stopped. All of the sudden I’d learn of the parties or get togethers at parks or the beach from Facebook pictures. I will always remember this article from your website that you posted on Nov 2011 where a mom described her journey through autism with her son and she happened to mention how parents that have children with illnesses get help and support from their friends but when you are facing the autism diagnosis, all but a few of them will uncomfortably walk away. This is very much the case.

    Now that my daughter started a special pre-K I have been able to start making new friends. The parents of other autistic children. It’s almost as if one day I woke up on east Berlin of 1961 and only be able to socialize with the rest of the people on that side of the wall. As I look in the eyes of those parents I see the urgency they probably see in mine, what did I do, is this my fault, could I have prevented this, how can I heal my child, my child will be healed right?

    The isolation from society as we knew it, is in my opinion why we feel isolated.

    • Dr. Udell says:

      Well, yes, Society is isolating special needs children. My beef is that the medical profession, of all people, is adding to the problem.
      Anyway, thanks for your story and courage.

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