"Muchos años después, frente al pelotón de fusilamiento, el coronel Aureliano Buendía había de recordar aquella tarde remota en que su padre lo llevó a conocer el hielo." - GGM
The first few months of Leo's diagnosis were incredibly difficult. We had to accept the fact that the future of our lives would be very different from what we had envisioned. Moreover, to give Leo the best support we could possible give, we also had to rush to learn many (many) things about autism that we had not known before. We are still learning new things everyday. Just below, I will list (in no particular order) some of the things we learned in the first few months.
I will note that, despite all of the uncertainties that the future holds, one thing will never change: Leo will always have our unconditional love.
What exactly "is" autism: I will be drastically oversimplifying here, of course. Autism is a neurodevelopmental difference of an individual. That is, an autistic person develops differently from neurotypical people. This difference in development means that autistic people have a unique way** in which they communicate and interact with others. Autistic people often have different sensory needs from neurotypical people. They might be easily overstimulated by loud noises, light, etc.
**Literally. Every autistic individual develops in a unique way; see the point on the autism spectrum below.
You cannot outgrow autism: Please, please, do not tell an autism parent that their child with simply "grow out of it". It is depressing for us to hear and borderline insulting. Autism is a lifelong neurodevelopmental difference, and autistic children grow into autistic adults.
The autism spectrum: The autism spectrum is not one-dimensional. It is incorrect, and insulting, for someone to say that "he/she/they are only a little bit/very autistic." A correct statement would be that the autism spectrum has many dimensions, each one corresponding to a characteristic and the many possible different ways that an autistic person can develop that said characteristic.
For example, common characteristics considered in the spectrum are language, motor skills, sensory, sleep, etc. Each trait presents itself differently in each autistic person.
Lastly, the autism spectrum is dynamic. That is to say, it evolves in time. An autistic person could have difficulties sleeping as a child but not when they are adults.
Autism is very common: It is estimated that 1 in 59 children are autistic. Moreover, boys are three or four times more likely to be autistic than girls. However, these numbers are probably going to change in the future as our understanding of autism in girls improves (see below).
How to help autism parents: Based on interaction with firends and family, who in the end of the day just want to help, I learned many things that can be depressing for autism parents to hear. Please do not tell us "I'm so sorry", or "he will grow out of it", or that "he doesn't seem autistic to me." Please, the best you could do is listen. Ask, instead, how autism presents itself in our child. Ask how you can support us and how you can support our child. Some easy ways: buy us lunch, a drink, or, again, just be there to listen to us.
Sleep issues: Two thirds of autistic children have issues with sleep. The most common of these is insomnia, but others can be: sleep apnea, restless leg syndrome, and night terrors. Leo's sleep is pretty awful right now. We find ourselves awake from 1 am - 4 am most days of the week. We're exhausted.
Delayed speech: It is common for autistic children to have difficulties with expressing and understanding language. Our beautiful boy is currently nonverbal/preverbal at 2.5 years old.
"Functional" autism is not a thing: Often one hears about someone who is a "highly functional" autistic person, or someone who is "very autistic." This is a horribly flawed understanding of autism. Firstly, it is based under the assumption that the autism spectrum is one-dimensional, which is wrong (see the fourth point in this list). In the medical profession, the different "levels" of autism are based on the level of support the individual needs. An autistic person that is level 3 needs a lot of support, and someone who is level 1 needs mild support. These levels are dynamic: someone who is level 3 now can become level 1 in the future if they need less support.
Autistic girls: Unfortunately, like much of modern biology, there is a considerable gap in our understanding of how autism presents itself in girls rather than boys. We are beginning to understand that autistic girls can have many differences in their development from autistc boys.
Autistic vs "with autism": It is my understanding that autistic people prefer to be called "autistic" rather than be called someone "with autism". Of course, you should always cater to the individual.
People without autism: Please do not refer to someone who is not autistic as "normal". It is insulting. A person who does not have a unique neurological difference in their development is called neurotypical. Someone who does not develop neurotypically is called neurodiverse. This broad definition includes autistic people, people with ADHD, etc.
The autism logo as a puzzle piece: You might have seen a puzzle piece as a logo representing autism. This logo became well known because it is the company logo of Autism Speaks. Many in the autistic community considers Autism Speaks a hate group, please read this information before you consider donating to autism speaks. There could be an entire blog post about these issues.