Open up a Google search. Type in Autism. Type in Down syndrome. Type in Cancer. Type in brain injury. Millions of results pop up. Type in a few more words next to the disorder or disease or syndrome and you'll find the exact answer you need.
Recently, I starting researching Landau Kleffner Syndrome. Another thing that my brother is diagnosed with - in fact, it is the first thing he was diagnosed with. What comes up? Barely anything.
Finding a local place to intern was impossible. Finding information about it much more than it is rare and incurable was impossible. After hours of researching - I can honestly say the only thing I know about this topic is what I've witnessed with my brother.
I want to learn more. I want to see what people are doing about it now - after the childhood has passed. I often struggle with how can there be one or two main ways to help people with Autism? Every single person is completely different within that diagnosis. So, what can they do for someone who is diagnosed with Autism and LKS? There so little known about LKS, what works and what doesn't.
Many people are wrongfully diagnosed with Autism when they have LKS. This has me wonder again - if so many are wrongfully diagnosed, are the ways that have been deemed "successful" within Autism really successful - or did they just get lucky? And vice versa - is there really little to no intervention for individuals with LKS - or have they just not put all the pieces together?
LKS is an epileptic disorder. Seeing what a seizure does to my brother - basically making him restart his brain in some ways. Sometimes, he loses entire ideas that he is learned. This is insanely scary. To think, a 30 second event within your body can ruin parts of your brain, set you back to square one. If this goes untreated, one seizure could ruin so much. Imagine if you are constantly having them - especially so shortly after being born? What does that do to development?
I know that there are so many great ways to help ease the symptoms of Autism. However, how can we help those with Autism that aren't gaining from the already known methods? And what if LKS was missed with these individuals? What if there was a better treatment for those who have Autism and LKS? Even though Autism is so closely related to LKS... What if the method to treating Autism (whether they have LKS and Autism or just LKS) is actually being counter productive? What if it's making it worse? Or sending individuals back to step one?
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.