Altered Response Hello! As some of you already may know, my name is Michelle, and my son Jaxon is autistic. Jaxon is considered non-verbal however he does communicate with his AAC (augmentative and alternative communication). Jaxon is considered a high support needs autistic individual. Jaxon has difficulty with safety awareness, eloping, and difficulty determining…
A Family’s Experience with HH and Autism If you are new to the community, my name is Kristy, and I’m the mom of Brett. Brett was diagnosed with a 2.1 x 2.1 x 1.9 cm Hypothalamic Hamartoma at 10 months old on Saturday, August 15th 2020. He began having Infantile Spasms and we rushed…
Becoming an Advocate Let’s start by defining an advocate. An advocate is someone who raises awareness, pushes for change, and makes facts known for those who are not fully being heard. When your loved one is diagnosed with autism, it is essential that you advocate for them to help their voices be heard. In…
Coming to terms with a Rare Disease diagnosis and Autism When you find out that your family is going to be growing by two more hands and two more feet, you start daydreaming about all of the “perfect” memories, right? You start to think about all the peaceful nights, the cuddles, endless love, and…
Parenting from Different Points of View When your child gets diagnosed with both an ultra-rare syndrome and autism, many mixed emotions are bound to arise between you and your child’s loved ones. I want to bring your attention to this because I feel as though it’s not talked about enough. When my son was…
Overlapping Characteristics of Hypothalamic Hamartoma Syndrome and Autism Spectrum Disorder When considering if an individual has an Autism Spectrum Disorder (ASD) in addition to HH, there may be some (or a lot of) overlap, and it is very possible to have both of these conditions. The art of diagnosing ASD comes from a trained professional…
Differential Diagnosis for those with Hypothalamic Hamartoma Syndrome and autistic characteristics When observing suspected autism characteristics, how does one know, “Is this neurological from the seizures? Or is this autism?” Both autism and HH are spectrum disorders and naturally, there may be a great amount of overlap. For example, both autism and HH may…
First Signs of Autism Spectrum Disorder in an Individual with a Hypothalamic Hamartoma I’ve written and shared my son Brett’s HH story, but his most recent diagnosis of autism spectrum disorder, given just a week before the age of two, is its own story. Before sharing the story of his diagnosis, you’d likely be…
