It’s about the words: “Outgrow Autism”

By Lisa Ackerman

After reading dozens of national headlines, instead of being hopeful I am offended (1.)  I will explain why:

Individuals with autism typically need many hours if not hundreds or thousands of hours of therapy – many different kinds based on unique needs. An enormous amount of time and energy is also spent by key support staff, immediate and extended families to help. In addition, many individuals with autism are sick (2.) They have medical issues that require comprehensive medical intervention (functional medicine) and for some, lots of it, based on the individual’s needs. All the hard work these individuals have to endure and for some with remarkable results does not mean they just “grew out” of autism.

The article’s title and the interpretation circulated by the media revealing an important study is misleading.  I believe the focus of the study needs to be on the word: RECOVERY. Please read the actual study for more details (3) and then decide.

One could guess that the University of Connecticut wished mainstream media had a different angle on a significant development: recovery for children with autism is possible. The estimates in the study reflect a 10-20% chance. This is better than the loss of hope being offered to parents at the time of diagnosis. Many parents, who come to TACA for help, often say that a finding of autism is often delivered like a harsh death sentence and it shouldn’t be.

Based on the circulation of this article, neighbors and friends outside of autism have asked me “can Jeff grow out of autism?” and “does that mean he and/or other kids don’t need therapies?” Or my all time favorite “Did they get misdiagnosed? Did they have autism?” The study’s media interpretation has them confused and I am again, frustrated. The media should be sharing this message instead: Work hard. Fight hard. Keep trying new therapies. Do not wait. Have hope.

“Growing out” of autism is an urban myth. Recovery from autism is possible as we have witnessed many times at TACA. This is the reason why we here to help as many families as we can, also knowing that any progress achievable by their children is crucial.

For all those kids (or adults) and their loving families: You deserve a parade, a large award and a front page story on this monumental achievement of recovery. That’s a huge accomplishment, and no, you didn’t just “grow out of it”.

References

1) In the news

http://online.wsj.com/article/SB10001424127887323301104578255721887372386.html

2) Kids with autism are sick.

https://tacanowblog.com/2012/10/15/many-children-with-autism-have-other-health-problems/

3) The University of Connecticut study http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/full

16 Comments Add yours

  1. Reblogged this on Puzzled Mommy and commented:
    Reblogging/sharing from the TACA blog:
    The media should be sharing this message instead: Work hard. Fight hard. Keep trying new therapies. Do not wait. Have hope.

    “Growing out” of autism is an urban myth. Recovery from autism is possible.

    1. Thanks so much for supporting TACA. It is appreciated!! 🙂

      1. This one just hit home : )
        We tend to hear that so much – it is exhausting at times to just keep educating people – but it is necessary – i love reading this blog & sharing it!

  2. Twyla says:

    If someone outgrows autism, does that mean they need a larger size of autism? Is their autism now too tight? Or are their wrists and ankles showing?

    But seriously it is crazy how people start with the statement that autism is incurable, intransigent, genetic, the brain is miswired, and then when someone recovers due to intensive therapy, diet, supplements, and/or medical treatments the same people say, “Meh! Sometimes happens! Would have happened anyways!”

  3. They only ‘grow out’ of autism if their parents have spent a massive amount of time, effort and a fortune in money for diet, biomedical treatment and therapies!!!

  4. Amie Donofrio says:

    To every parent out there with a child of autism, pat yourself on the back. You’re about to begin a journey that you never thought you can do. It’s amazing how strong you can be when it’s your child. My daughter has Autism and is 19 yeard old. I would like to give some advice that I wish I knew when my daughter was diagnosed. You need to respect the world they live in. ABA teaches you how to do that. Yes, I am an emotional wreak. It takes a toll on your health. However, when you learn how your child sees the world, for some reason it all makes sense. You need to understand they don’t process thoughts like we do. Stop trying to make your child think like every other kid. They need to know you hear them. Once they do the temper tantrums will start slowing down. It doesn’t happen over night. It takes years of ABA and early intervention is key. It will feel so overwelming. Then one day when your child looks you in the eyes and talks to you in their own way, you will feel such joy and love!!!

  5. Yes! One of mine is recovered. Or so close to recovered, he’s no longer recognisably autistic unless he’s having a spectacularly bad day or has eaten some gluten. I hear SO often, “So, he was never autistic then! I knew it!” or “He grew out of it awfully quickly!” or “I told you he was just mimicking his brother!”

    Um no. He had autism. He was diagnosed by a team of specialists – an SLP, a clinical psychologist and an MD with specializations in child development, autism, and had an alphabet soup behind his name. They all agreed he was autistic.

    ABA made things WORSE – he regressed further while in ABA. Son-Rise and biomedical treatments were our answer. And they will be for our other son too. He’s just a tougher nut.

    Check out Son-Rise (http://www.autismtreatment.org) It was the best thing we ever did. For our kids and for ourselves. I am not affiliated with them. Just a happy, happy customer. 🙂

    1. HI Luna

      Great post back. Thank you and congrats!

      Question: Was Sonrise paid for or were you self funded?

      At TACA, we are a BIG fan of therapy, the hours your child needs, covered by insurance or state resources, with a therapy team that meets your childs needs.

      All my best,
      Lisa

  6. Susie Christensen says:

    So my child isn’t sick…..he doesn’t have gut issues or allergies to foods…..so we aren’t spending tons of money for therapies……so I guess my kid still just have to stay autistic…. sigh……oh wait, I am okay with that….many autistic people, just like everyone else, do have medical problems associated with diet and GI conditions…..and everyone who is in pain and distress should get treatment. Treating those problems will not change someone’s basic neurology, but it will help their physical reactions and behavior due to those conditions. Just my thoughts…

  7. Maria ONeil says:

    I have gotten this constantly with my Connor.. NO he didn’t just grow out of it , or my fav that he just never had it. To which I reply no he was a very sick little boy with a mother who refused to let it win , it took me two years but it is achievable.

  8. Andrea says:

    I hear that all the time – that my child outgrew his autistic behaviors or that he was never really a severe case to begin with. I try and respond positively, saying “Thank you for noticing how far he’s come.” But no one, unless you’ve lived through it, knows all the countless hours and emotions that come with recovery, all the hard work both the parent and the child has to go through. It can feel like the fight of our lives sometimes. I’m happy to say it is all worth it, as my son is now a happy, healthy and verbal four year old in mainstream schooling. There is still some work to do on his immune system and some catch up needed on verbal skills but the desire is all there now that he is not feeling so sick all the time. A big warm hug to all the other parents out there who are going through the same thing!

  9. Jennifer Bate says:

    I have already had a family member, who thinks they have a clue, but don’t…have NO idea how many supplements, doctors visits, therapy appointments, IEP meetings we’ve been to, …have complained in the past “all they talk about is him” to others in the family (they did this ANGRILY when I questioned why their son might not be talking)…say “well he seems to be growing out of it”. I could just scream. If I had the energy. I agree, it is deeply insulting.

  10. Sara says:

    I struggle with this. I watched as my nephew “grew out of it” with minimal interventions; just speech therapy provided by the public schools. On the other hand my own son was diagnosed 8 years ago. We have tried numerous research backed biomedical treatments and therapies. Almost all have had some positive impact, yet my son is still significantly impacted by autism with minimal expressive language. I also struggle with the attitude that recovery is possible if you only try hard enough. This is what drives some parents into trying interventions that are not backed by research and sometimes unsafe. The truth is that improvement is possible and with some these improvement may be enough that an autism diagnosis is no longer appropriate. Currently an autism diagnosis comes from a set of observed behaviors, not medical testing. It is plausible that a 2 year old would display these behaviors and then without any intervention not display them a few years later. I however would not gamble with the odds of a child growing out of it and would instead look for interventions that will ensure they have the best future possible.

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