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Why not Autism?!?!?

I realize this question may upset some people but that is not our intent. We use this hashtag so people WILL ask us, “Why NOT Autism????” The answer to this question can be complicated, but the simplest answer is that children with Lamb-Shaffer Syndrome are often MISdiagnosed with Autism and that prevents them from finding the correct diagnosis. Now…the less simple answer. It’s no secret that many people believe that Autism is over-diagnosed/used as a blanket diagnosis. Having seen it first hand, I agree. More than once, a DOCTOR offered to diagnose Isaac with Autism, even when they were pretty confident he did not have it. Some offered so we could get services we wouldn’t otherwise get, some offered just so we would have some sort of diagnosis, and some offered because they didn’t know what else to do. But I can tell you, with absolute confidence, that Isaac does not have Autism (that has been verified by TWO Autism screens, one by the University of New Mexico and the other by the Cleveland Clinic). I can also tell you, (with a little hesitation because I have not met them, nor am I a doctor), that not a single person with Lamb-Shaffer Syndrome has Autism either, weather they have the clinical diagnosis or not, rather, they have some of the symptoms that we have come to associate with Autism. Why is proper diagnosis so important though? The truth is, in a perfect world it wouldn’t really be all that significant, but in the insurance run world we live in right now, it is imperative that we don’t continue to let Autism get over-diagnosed. Currently it is reported that 1 in 59 children are diagnosed with Autism, and because of that, there is a RIDICULOUS amount of money given to Autism foundations for research. This means that things like Lamb-Shaffer Syndrome and other less common GENETIC disorders don’t get the attention and funding like Autism does. Up until recently, all of the genetic research that has been done for Lamb-Shaffer Syndrome has been paid for by parents of those with LSS and donations from our generous community. There are countless studies done on Autism and seemingly ENDLESS resources for those studies, so you see how it can be infuriating that there is little to no funding for genetic conditions such as LSS. Additionally, insurances cover significantly more things for those who are diagnosed with Autism. Specifically, ABA therapy. This is a specific type of behavioral therapy that has actually been in use for many years, however the Autism community has fought to have it covered by insurance. That feat is amazing, but the fact is that it would help so many other people who do not have Autism but insurance companies can't see that because they are blinded by the garbage they have been fed that only people with Autism could benefit from it. If it could be understood that there are so many other people in the world with symptoms SIMILAR to Autism, maybe insurance companies would realize these therapies would benefit them too. All this to say, I mean zero disrespect when I post things like #WhyNotAutism. But I am confident in my stance that something needs to change and we need to stop accepting a diagnosis of Autism until all other avenues of diagnosis have been explored, and even then, follow ups should be done! Please do not hesitate to reach out to me if you have questions about this matter, Lamb-Shaffer Syndrome, or Whole Exome Sequencing. As always, SHARING is the most helpful thing you can do because as our community grows, so does our power and reach 💙💛

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Family Tafoya
Family Tafoya
Dec 02, 2021

Hello My name is Petra, I live in Albuquerque, New Mexico. I have a daughter who is now 15yrs old. I've had her in therapy since she was about 18mths but I didn't find out she had LSS until she was 13 yrs old. So I've been swimming in the ocean without a float for some time now. As I have now faced much more challenges with puberty in the works not to mention COVID. We've now hit a wall with treatment, no one wants to help or knows how to help but I than realized that I've been seeking treatment for the wrong diagnosis although this doesn't change the fact that there is no help anyway but I have…

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