Somewhere In-between Savant and Severe

Most people hear the diagnosis of someone having Autism and they immediately assume the person is either a savant-genius and expect an Elon Musk or Temple Grandin type person. Sometimes they expect something like Dustin Hoffman in Rainman. Others assume the person must have intellectual disabilities, are non-verbal, basically a pitiful little soul they must automatically have pity for.

Truth be told, it is called a spectrum disorder for a good reason. Autism is never a one size fits all diagnosis. Long-term prognosis is uncertain. Each person will have a completely different outcome based mostly on genetics, upbringing/environment, early intervention/therapy, and resources available to them. Finding professional, emotional, and education help early is key to success in reaching fullest potential for any child, but especially important for someone on the Autism Spectrum.

My neurodiverse family is comprised of varying degrees of severity and additional needs. Regardless of that, the second someone learns of this fact, I receive “I’m so sorry” pit parties and sad faces. I have even gotten those who are overjoyed and have lots of questions about what their “special gift” or “Super powers” are.

I hate to disappoint y’all. We are “none of the above”. In many ways we are very “normal” and “boring”. In just as many ways we are very different. But what is “normal” anyway? I’ve never seen a single “normal” family in my lifetime. We are all unique in some way or another.

I shuffle around family members to more therapy sessions than sporting events. I have more doctor’s appointments than most. Schooling requires an IEP (Individual Education Program). We have the oxymoron experience or more structure yet sleepless nights. We have genetic syndromes and special diets to deal with.

To look at my family, at first glance you might miss noticing any Autism characteristics at all. Spend a little time with us and you will start thinking some of us as “quirky”, perhaps even “spoiled”, “a little off somehow”, etc. . if you never heard of ASD (Autism Spectrum Disorder).

We do have lots of strengths in our midst of difficulties. Nothing Hollywood Movie worthy, but we personally do have an extra dose of honesty, integrity, memory, and things like that. If they come across as your idea of “normal”, please don’t ask me if I’m sure the doctor got it right, or did they get tested properly. Just because you don’t live with them fulltime and see the symptoms doesn’t mean they don’t exist.

The next time someone announces, or confides in you, that they or a family member are on the Spectrum, wait for them to explain that further. Feel free to ask questions. Don’t assume anything. Every person and situation are different in life. A diagnosis of Autism is no exceptional to that rule.

Kindness and compassion go a long way, so does acceptance and understanding. In the end, I want you to see my family members as a human being. They are not on this earth to impress anyone and jump through hoops to entertain you if they do possess certain gifts. On the flip-side, they are not requiring sympathy if they need a little (or even a lot) of extra help. No one wants to be pigeon-holed into someone else’s idea of what or whom they are. In the end, basically, every child and adult on the face of this earth is just a person wanting to be loved. Having Autism does not change that.

To Supplement or Not to Supplement, That is the Question 

With every child, a parent might wonder if they are getting the proper amounts of nutrition daily. With a child on the Autism Spectrum this concern grows by leaps and bounds. It is a fact that most of those with Autism can be picky eaters. This raises obvious issues with lacking certain vitamins, minerals, and protein levels. 

One study from Emory University found that children with Autism are five times more likely to have mealtime challenges such as tantrums, extreme food selectivity and ritualistic eating behaviors. 

They found an overall low intake of calcium and protein. Calcium is crucial for building strong bones. Additionally, adequate protein is important for growth, mental development and health. Severe autism has been linked to low levels of certain nutrients (vitamins B3, B6, C, calcium, iron and zinc). 

Omega-3 fats are also known to be important for good brain function. 

Good nutrition is important as poor diet can affect 

mood, learning and sleep. Healthy foods give the 

brain and body the nutrients that they need in the right amounts. 

For children with Autism, a nutritious, balanced eating plan can make a world of difference in their ability to learn, how they manage their emotions and how they process information. Because children with ASD often avoid certain foods or have restrictions on what they eat, as well as difficulty sitting through mealtimes, they may not be getting all the nutrients they need. Nutritional Supplementation might be a must to achieve a healthy diet. 

Did you know that in some cases you can get lab work done to test for vitamin levels? Vitamin D is one that is regularly tested now with Covid going around. But there are other ones you can easily get a lab test ordered to check. 

On top of supplements, some people on The Spectrum respond well to special diets like the gluten- or casein-free diet which can sometimes improve symptoms of Autism. Gluten is a type of protein found in wheat, rye and barley. Casein is a protein found in milk. Proponents of the diet believe people with autism have a “leaky gut,” or intestine, which allows parts of gluten and casein to seep into the bloodstream and affect the brain and central nervous system. Their belief is that this may lead to Autism or at least magnify its symptoms. 

Others believe a ketogenic diet, may work well. There was a study of 30 children with Autism, the participants were placed on a ketogenic diet for six months. The diet specifically consisted of 30% medium chain triglyceride oil, 30% fresh cream, 11% saturated fat, 19% carbohydrates, and 10% protein along with vitamin and mineral supplements. This was not a really strict ketogenic diet. However, the children that stayed with the diet were able to get into ketosis. The children that stuck to the ketogenic diet “presented with improvements in their social behavior and interactions, speech, cooperation, repetitive movements or utterances, and hyperactivity, which contributed significantly to their improvement in learning.” 

You may also want to consider a variation of the cyclical ketogenic diet where the ketogenic diet is followed for weeks to months and carbs are then slowly introduced back into the child’s diet. If the symptoms get worse after the reintroduction of carbs, then start reducing carbs until the child feels better. 

There was another pediatric study that showed that the most common nutrient insufficiencies in children with autism were fiber, folic acid, calcium, iron, zinc, and vitamins A, C, D, E, K, B6, and B12. So, we know from all of this that there is a very good chance your child might need a supplemental diet. 

A great place to start is to first chat with your child’s doctor. The second place I would suggest sitting down with is your child’s Occupational or Speech Therapist. American Autism and Rehabilitation Center has Feeding Therapists who could help you one on one in this journey of picky eating and overall poor eating habits. 

Don’t be afraid to ask. You are your child’s voice, their advocate. Help is out there. You are not alone dear friend. “Hope for your special needs child” is their motto. I can tell you firsthand, it’s true.

A Pet Peeve….

I have a pet peeve. People trying to pigeonhole my family into a group of labels drives me mad. I do not have a problem with the labels themselves. I realize that labels are sometimes very useful when it comes to getting medical and therapeutic services. I just want others to remember there is more to my family’s life than Autism. 

I am a caregiver, true. However, even with my neurotypical children, technically, I was their caregiver. True, my neurodiverse children need additional care. But they are all on equal footing in many ways. To make one child stand out in my family merely based on the diagnosis of Autism is sort of unfair. Each person in the family has their own strengths and weaknesses. Just because one child might require more time and attention does not mean thar within our family we see them as anything other than our child. 

You would never address someone with an illness as “the Cancer Lady” or “That Crippled Man”. Everyone knows that comes across as callus and rude. We would all ignore the label probably. If we did address it, it would be “The lady with Cancer” or “that man who is crippled”. The person is acknowledged first, then the underlying issue may, or may not, be addressed. 

For some reason, when it comes to Autism, the diagnosis is sometimes first and foremost. To me this takes away from the identity of that said person. Autism is a part of our daily life, a large part at times. It is not our whole existence though. 

Please allow my (grand)child to be a child. Allow me to be a (grand)parent. We know we do not lead a neurotypical life. Though, in many aspects, our life is typical. 

My husband jokingly says, ” neurotypical people are the weird ones”. Normal is in the eye of the beholder. Our family life is typical… to us. 

There are times I like to vent and even complain. Think about it, everyone complains about something at some time. It doesn’t mean I want your pity. I don’t want sympathy. I don’t even expect you to understand what I am dealing with. Like with any parent, I am grateful for a friendly listening ear and shoulder to lean on from time to time. 

Allow me to be a mom, a wife, a person. Allow my (grand)child to be a kid, my wonderful, unique, quirky kid. Treat us as normal. Fact is, no one is ever truly “normal”. Thank God we all are not exactly the same. A Neurodiverse Life can be hard at times, but it is never boring. 

While we can gladly embrace our differences, let us also remember that in many ways, we are all the same. Let us increase acceptance and inclusion of all people while embracing neurological differences. Allow families to be families and not a group of labels. Let us all learn to view Autism as just another way of being and not a disease.