We know just how overwhelming it can be to find out that a friend or loved one might be on the autism spectrum. We have gone through that ourselves, as our boys are on the autism spectrum.
It was very daunting at first. You can read about our story here, what to do after you get your diagnosis, and see how we spent time growing with our boys as they’ve become teenagers and young adults.
Needless to say, we wanted to bring more information to the public in general, but specifically parents and guardians that might be facing this diagnosis. This whole site is all about that. But first let’s start with what autism is and isn’t, as well as some common terms you might see.
So What Is Autism?
According to NIMH, the autism spectrum disorder (ASD) is a “neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Although autism can be diagnosed at any age, it is described as a ‘developmental disorder’ because symptoms generally appear in the first two years of life.” Autism Speaks refers to it as a “collection of disorders”.
While one may diagnosed as a young child, we are seeing more and more adults are being diagnosed. Why is that?
Well, for many years, most assumed those on the spectrum had to fit within a certain mold, and that mold was often a severe lack of communication and interpersonal skills. However, as a society, and those responsible for testing, failed to account for was the spectrum part of the name. Some people, especially females and those with a higher level of intelligence (not initially associated with autism), were able to mask their symptoms and hide the fact they were on the spectrum.
Because it is a spectrum, and doctors are still learning about it, we are still seeing changes occur to the official definition which sometimes increases the number of people diagnosed, or sometimes it decreases the number.
Spectrum Disorder – What Does That Mean?
Often we refer to people diagnosed as “on the spectrum”, and many people think it’s like a volume controller. Some people slide it up all the way where it is blasting out your ear drums, and some are down, aka, just a little loud. This is the reason why I’ve had people tell me “we’re all a little autistic”, just because they had one trait found on the list of symptoms of those on the spectrum. However, this line of thinking is inaccurate.
To truly be on the spectrum, you need to have certified disorders in multiple categories. How severe you are in each of those categories is where the spectrum term comes from, as you may be severe in one category, but not in another. Likewise, you may not be severe in any of the categories, or in all of them. Each person is unique in this way, which is why different people on the spectrum will be so different from one another.
However, if you are only showing symptoms in some of the categories, and not all, you should be diagnosed under a different classification.
What Are the Categories That Affect Someone with Autism?
The major categories include:
- Problems with Social Communication
- Challenges with Interaction Behaviors
- Restrictive and Repetitive Behaviors
Social Communication
Some studies show that up to 80% of communication is non-verbal. However, someone on the spectrum will have difficulty picking up on these non-verbal clues. Things such as making appropriate eye contact (often holding a gaze too long, or not at all) will give them issues. Consider how staring at someone is considered threatening in some cultures, where not looking at a person might cause them to miss the hint given by gesturing at an object or location, or be considered not giving a person their due respect.
Likewise, when they communicate, they may not include appropriate gestures (such as pointing in a specific direction), have what might be considered an inappropriate facial expression for the situation, or other aspects of communication.
Of course, reading and verbal communication may also be limited, which further makes communication difficult. For example, one of our sons can read words at a high school level, but can only comprehend those words at a first to third grade level. While he is better at verbal communication, there are still limits compared to other people his age. This often throws people as he is clearly a young man in his twenties, but acts and understands like an elementary to middle school child in many ways.
Many people on the spectrum are listed as having communicative disorder. This was part of our eldest son’s first diagnosis. Now we’re seeing more specific disorder definitions, such as verbal communicative disorder which means speech and/or auditory might be affected, but writing and other forms of communication may not be impacted. There are other definitions as well, and this seems to be an area in flux at the moment.
Interaction Behaviors
Interaction with others is another aspect that is often effected. This includes the aforementioned eye contact, but can also include a variety of behaviors including something as simple as knowing how far to stand from someone.
This is a social cue that varies between different cultures – however in general, the less you know someone the further you will typically stand from them. Think about yourself at a store. If you are with your child, you want them close to you, to protect them/keep them from wandering off. If you run into a coworker, you will keep a bigger distance between you two, than a close friend. And if you are strangers, you may keep an arms length in distance or more.
However, someone on the spectrum may always stand real close, making some people uncomfortable. Our boys used to even be so close as they would actually be touching others. They knew it was OK with a parent, so they assumed it is OK for everyone.
Restrictive/Repetitive Behaviors
Restrictive/repetitive behaviors often include things like stimming, repeating phrases that may or may not be appropriate in the current context, and repeating certain actions over and over. Sometimes these behaviors will be seen as a “nervous tick” if it’s minor, to something compulsory.
In many cases, for the individual on the spectrum, it may feel very compulsory to them, either because they cannot control it, or they find it soothing, and don’t want to stop because it helps them self-regulate. For this reason, their behavior may lead to a secondary diagnosis of OCD (Obsessive Compulsive Disorder).
False Notions About People On The Autism Spectrum
Unfortunately, some of the problems that people on the spectrum suffer from, may lead them to be labeled as “difficult”, “disruptive”, “anti-social”, “stupid”, and/or “bad/misbehaving”, and more.
Often, the real reason for these labels is that the people working with them, don’t know how to work WITH them.
Behavior Issues
I hear all the time that people on the spectrum are disruptive, “bad”, or some similar term. However, what we often find is that not everyone knows how to work with people on the spectrum. They don’t realize that something is upsetting the person, and since they have issues with social interaction, they don’t know how to let people know. They try to hold it in, until they finally “lash out”. In reality, they might have been trying to manage for hours, days, or even weeks, and finally couldn’t hold it in anymore.
As parents, we have had to learn to watch for signs of impending problems. And they’re always there. Then we can know to dig and find out the real issue or triggers, so we can resolve it before it becomes a problem.
We are constantly told my our sons’ teachers and therapist how happy and excited our children our. This is because we’ve taken the time to learn how to work with them, to limit unnecessary stressors, and learn to fit into their life.
Now this is not to say there may not be behavior issues. But we’ve found it’s often for the same reason why there are behavior issues in normal teenagers and adults; Inconsistent or missing boundaries for proper behavior. We’ve had to be extra patient working with our kids, and it takes longer to train them in correct behaviors, but as they’ve grown, we’ve had very few real behavioral issues with them.
Sub-Par Intelligence
For example, our son who has difficulty with written and verbal communication was considered under-performing academically while in school. However, if you put him in his element, he will excel.
For example, at age 5, he was doing 100 and 250 piece puzzles as he could see how the patterns worked and knew how to put them together. In comparison a neurotypical child of the same age will typically only be able to complete a 12 to 48 piece puzzle. This was well beyond his age level, yet he treated it like it was nothing at all. In fact, he could handle both 2 dimensional problems and 3 dimensional problems with relative ease and at the skill level of someone who was in their teens, despite being half their size.
He is also very good at problem solving. Sometimes not in the ways we want him to, such as when he stacked items on top on one another so he could climb up and get cookies from the cupboard. And sometimes in ways we found hysterical, like when I asked him to “give me a high five” but put my hand above where he could reach. He looked at me for a second, then grabbed my arm and pulled it down so he could do as requested, solving his problem – something I’ve seen a lot of neurotypical children not be able to do. His obsessive tendencies allow him to learn every little detail about something that interests him, just don’t expect him to care about history or that spelling test.
And as we’ve learned more recently about people on the spectrum masking, we’re learning that more and more people have it while holding down regular jobs in what would be considered both blue collar and white collar jobs.
They may even be considered as a leader in their field. As some people have found, being on the spectrum can allow the individual to focus on challenging topics and tasks thus allowing them to succeed when a neurotypical person may not. As people have looked at historical figures, it is assumed that people like Michelangelo, Sir Isaac Newton, Charles Darwin, and Albert Einstein were likely on the spectrum.
There are even several well-known modern day figures which have disclosed they are on the spectrum, including: Dan Aykroyd, Anthony Hopkins, Bobby Fischer, and Bill Gates. Each of these individuals are considered one of the top people in their respective fields.
Where Does Autism Come From?
This has been the million dollar question floating around the community since our first child was diagnosed. The answer isn’t always clear, or communicated well, in addition, I don’t think there is a definitive answer – no matter what some people may say.
We know that there is a genetic component to autism. However, unlike things like breast cancer or downs syndrome which can be linked to a single gene or chromosome, there are several genetic components (genes) which seem to each contribute to being on the spectrum. Because it is genetic, siblings have a higher rate of being on the autism spectrum.
We know that the age of the parents, especially the father, tends to be a factor in if their children will be on the spectrum. The older the parent when the child is conceived, the more likely the children are to be on the spectrum. This however seems anecdotal, as I’ve not found any stats or percentages which show increases.
As with breast cancer where mutations in the BRCA1 or BRCA2 gene increase the risk of having cancer, it doesn’t mean you are guaranteed to have it. This is similar for autism, where it is estimated that 40 to 80% of autism is genetic, however having those genes doesn’t mean you are necessarily going to be on the spectrum. Additionally, while there have been close to 1000 genes identified as possible contributors, only about a dozen have been confirmed, and this still makes it way more complicated than something like the breast cancer which is only affected by two potentially mutated genes.
It was long thought that autism was passed on solely through the father, however, as we learn that females have historically been under counted since they are better at masking their symptoms than males. So this may be a false notion.
The other thing we don’t know is why does it appear in some people with the mutated gene(s), and not in others. Is there a catalyst involved?
Over the years people have tried to identify everything from vaccinations to pollution to the foods we eat as potential causes. While all of those have legitimately been dis-proven, could one or more of those factors be a catalyst to turn on/off the genetic components? This is something I’ve not seen studied, and it could be a very difficult thing to study. So we may not know for a long, long while the real, actual causes of autism. Until then, we learn to better work with it, and explore ways to work with it in our daily lives.