This weekend will mark one year since Covey was baptized a member of The Church of Jesus Christ of Latter-day Saints. Many people, including members of our own family were confused why he would be baptized since he was born with the neuro-genetic condition Angelman Syndrome (AS).
We were concerned because in our church it is kind of taboo for individuals who are neurodivergent to be baptized. The general rule of thumb is they are “without understanding” and don’t need it. So, trying to navigate our way through this we waited until after he was 10, well past the recommended eighth year when children are typically baptized.
However, Covey grew up going to church, he was taught in our home, and sat through every family night as we prepared his younger brother to be baptized when he turned eight. After his younger brother got baptized, Covey constantly signed to us and used his AAC device to tell us he wanted to be baptized as well. Thankfully he kept at it, because for several months I didn’t really accept what he was saying and kept asking him just to make sure I was understanding him clearly. Oh he had to learn so much patience from me!
So we made preparations and planned a very small gathering at the actual baptism to help keep his anxiety level down. It was a beautiful experience and Covey was absolutely beaming from ear to ear once he was baptized, confirmed a member of the Church, and received the gift of the Holy Ghost. He’s always had a big smile, but this was even more, it was very special. This was much more a declaration of his love for and desire to follow Jesus Christ than just an ordinance of repentance. I am eternally grateful we didn’t listen to anyone else and finally helped facilitate this meaningful experience for him.
Recently a church leader told me that he believed individuals like my son were so righteous that they only needed to come to earth to gain a body; that they didn’t have to go through the same challenges that the rest of us do, and because such, they’re shielded from the same accountability. Basically they don’t need baptism but are automatically saved in heaven. He was saying this to me with good intent and on the surface, this type of thinking might appear merciful and inspiring, and I will admit I grew up believing this somewhat cultural church sentiment as well. But that has completely changed after having two of my three children born with Angelman Syndrome.
Why do we believe this notion as members of The Church of Jesus Christ of Latter-day Saints? I think it all stems back to two things: what we believe in regards to baptism as a church and how we as a society view the intelligence of individuals who have special needs/ are neurodivergent. The doctrine on baptism is sound and true but our societal beliefs about the intelligence of neurodivergent individuals is lacking at best.
Mormons believe that children are automatically saved by the grace and power of Jesus Christ’s atonement and do not need to be baptized before the age of eight, which we believe is the age at which children can become accountable for their actions. This is explained beautifully in The Book of Mormon, in Moroni 8:11-12,15.
I personally love this doctrine and view it as a tender mercy of a loving and merciful God. But I realize that this doctrine can be tricky when we as a society tend to arbitrarily label neurodivergent individuals as having child level intelligence way past their childhood because they are unable to fully communicate and express themselves.
And why as a society do we automatically assume the lack of intelligence in individuals like my children? Medical professionals unfortunately often perpetuate this falsehood. They want to measure and characterize conditions in order to define them. And even though this is necessary and helpful, it can be very damning to an individual receiving a diagnosis like Angelman Syndrome when his parents are told he will likely only reach a 24 month old level of intelligence.
They say things like this because of inaccurate testing often done through the educational system. Educators have the need to measure progress, but unfortunately are still using testing which can give results that are very misleading. With AS in particular, testing can be so inaccurate.
To understand why, you need to know a little more about AS. Individuals who have Angleman Syndrome are characteristically not able to verbally speak. They also have major struggles with dyspraxia (think of this as your brain telling your body to do something and your body does something else) and ataxia (you can think of this as having trouble initiating and coordinating movement in your body). They are also prone to seizures, sensory processing and impulse control issues, and can have high levels of anxiety.
Typically they are taught to speak using a picture exchange system or augmentative and alternative communication (AAC) system. Today we have many more options for communication than were available even ten years ago, but being able to learn to speak using a picture communication system can be extremely challenging due to the above reasons and sadly many individuals often don’t even get access to learning how to speak with an AAC system for years after they are diagnosed.
But then medical and educational professionals still demand our children be tested with the same tests intended for children who are able to verbally speak and write. It’s no wonder our kids show up as having the intelligence of an 18 month old or 24 month old. This form of testing is inadequate at best and would be like me asking you to take an aptitude test in Mandarin Chinese when your primary language is English. Do you see how misleading the data from this type of test would be?
Then consider these children’s inability to ask questions and receive feedback. Think about not being able to explore the alphabet and gain necessary literacy skills, which are the foundation of all education. Then think about how frustrating this would be and consequently how these kids might start behaving negatively which would further negatively impact others’ view of their ability to learn.
Just stop and consider for a moment what you would do if day after day you could not speak or write. And not just that, but no one knew what language to teach you, and you were left to improvise. And even when you did get access to an AAC system it was just so darn hard to use because your body wouldn’t cooperate most of the time. I know for a fact that I would be livid all the time. Probably hysterical! But then I might get tired of it and just give up. I think the pendulum would probably swing between rage and apathy. Let’s just be honest here!
But wouldn’t it be tempting as a society, or as medical or educational professionals to view individuals like this as having sub par childlike intelligence well past their childhood? This is exactly what has been happening for centuries. They are perpetually viewed as having an infant or childlike mentality and treated accordingly. But really, the problem lies in our inability to reach them and unlock their voices, not in their inherent intelligence. Please don’t ever “baby talk” someone who is neurodivergent. It’s rude and it’s ugly.
So this brings me back to the sentiment that individuals like my children do not need baptism and were so righteous before they were born that they received bodies which wouldn’t need to be tested and are automatically saved in heaven after they die. I really believe this comes from a mixture of doctrine and societal beliefs.
I’m not saying that this isn’t a nice thought and couldn’t possibly be true. I don’t know why each of us end up in our respective situations. And I wholeheartedly believe God will only judge us based on our individual knowledge and understanding, and it will be a merciful completely personal and one on one thing.
But there are two major problems with the blanket statement that all neurodivergent individuals are without understanding and do not need baptism:
- This type of thinking automatically presumes incompetence and a lack of intelligence in these individuals. Simply put, this is just wrong.
- This type of thinking is a nasty cop out that potentially prevents church leaders and teachers from putting forth the effort to provide individuals like my children with a meaningful learning experience at church, because they supposedly do not need baptism or spiritual growth in this life.
Do you see how this type of thinking can be really hurtful to individuals who are neurodivergent? Do you see how it, in and of itself, is perpetuating the lack of knowledge in these individuals? Not only does it show a total lack of respect for their intelligence but it also alienates them from having meaningful relationships and growth. I completely understand and accept that we should show compassion for these individuals and the struggles they face. But it is just unacceptable to label them as children for the rest of their lives.
So if you are a parent out there wondering whether baptism is right for your neurodivergent child, of course it is! Baptism and the gift of the Holy Ghost are right for everyone, and receiving them is a personal decision. They are gifts and blessings to everyone who receive them. Don’t let society’s views skew your heartfelt knowledge of your child’s intelligence and need for spiritual growth.
And if you’re someone who doesn’t have a neurodivergent child but find it hard to let go of the notion that these individuals can’t progress in spiritual knowledge and commitment, please try. Please don’t take it upon yourself to decide whether baptism is right for one person and not another, because what you’re basing it off of might just be a societal belief and not doctrine.