How do you know?

How do we know Caleb has autism? Well, as you saw in my last post, it was not a simple process for us because Caleb is very high functioning. His challenges are often unnoticeable… until they aren’t. It’s been harder to understand him because he has so many times where he can “perform” or behave like a neurotypical child. We go through seasons of really good times and seasons where we face more challenges and autism seems more present in our daily lives. The following post is to help others understand his autism symptoms and how we were able to make this diagnosis, but it is not a clear picture of who Caleb is on a daily basis. He is affectionate, bright, enthusiastic, loves to learn, loves games, and is a sweet older brother to our son, Mason (much of the time, anyhow!). The following are the symptoms that are not present all day, every day.

ASD is diagnosed based on the presence or absence of certain behavioral symptoms in: social interaction, communication, and behavioral oddities or interests (Kaiser Permanente, 2006).”The first is in the way the child develops. A child with autism may start to develop normally, and then seem to stop,…or be very good in some areas and very poor in others. It is this inconsistency that is important in making a diagnosis” (KP, 2006). Caleb walked at 10 months and he knew his alphabet at 22 months. He reached all his early milestones on time or way before. Yet, as he got older, he began to show delays in gross motor and fine motor skills. He also seemed to forget things he’d already learned. He mastered writing his name, and then seemed to forget how. Currently, and even with lots of OT already (because of his Sensory Integration Disorder diagnosis in 2014), his fine motor skills are at a 3.5 year old’s level (he’s 5). He still has difficulty riding a bike, swinging, sitting up straight, and with other gross motor skills as well.

One of the biggest reasons this diagnosis was hard to make is because Caleb is very friendly and social most of the time. He loves people and attention. He has friends his age, but he does prefer adults (adults are better able to compensate for some of the areas in which he lacks sufficient skills). He is very affectionate and loving. He makes decent eye contact. “It is not that autistic people do not relate to other people; they relate in odd ways. It is not that people with autism do not want to make friends, but they often do not know how” (KP, 2006).

The second diagnosable area is communication. Caleb has difficulty with conversation, offering information, nonverbal communication, and with emotional communication/awareness. It has only been recently that Caleb will say, “I love you, too” after I say it, or respond when asked how he’s doing. He often seems to space out and not listen, or will respond to a question you didn’t ask, or shift topics to his own interests without responding to what was said prior. He will say made up words or gibberish to compensate for a lack of understanding, or to avoid complying. He will sometimes repeat made up words over and over or make strange sounds. Or hyper focus on a statement and repeat it over and over. He often seems to be in his own world. I thought this statement was perfect,

“People with autism see the world like a radio station that is poorly tuned in. Sometimes the world comes in clearly and at other times it does not. Therefore, people with autism tend to respond very inconsistently. For example, sometimes they will appear to hear you and at other times not. Autistic people may at times appear perfectly typical, but at other times very withdrawn. Inconsistency is a hallmark of autism” (KP, 2006).

That is Caleb to a T. I know that as he gets older, more will be expected of him socially, and we’ll see these issues even more. Continuing to teach him social skills will be paramount to his ability to maintain relationships in the future. I also see that he often needs some more time to process a question before answering. He will try to divert the attention away when he’s too overwhelmed by saying made up words or making a sound. He needs patience and someone who is willing to give him a few extra moments to process the question so he can answer when he’s ready.

He also has a difficult time understanding other people’s need for personal space, for example, not touching near or directly on people’s private areas. These are things I have taught and talked about very regularly, and he just seems to forget. Manners are also something that he has trouble remembering as well, despite the fact that I have been a total nazi about them. Sitting in his seat, buckling his seat belt, brushing his teeth, using his napkin, and other basic skills are a challenge. Again, these are skills I have to teach or remind him about daily many times.

The third area is behavioral. This was the most obvious category in which we saw Caleb’s challenges. “Autistic children can have a narrow range of interest, repetitive behaviors, or fixations” (KP, 2006). Caleb’s interests are usually very intense. Recently he became obsessed with numbers. He wrote out pages of numbers, asked questions about numbers, and wanted to add and subtract all the time. Now, he’s into games. He wants to play games all the time. He wanted a list of all his games, and will make a check mark by each after playing. He has decided we need to play each game 10 times. I find much of this very endearing and special. He lines his toys, will set up all his games on his floor, and will lose control if Mason puts one item out of place (that part isn’t endearing).

He sometimes has difficulty with transitions or change, has very large reactions to minor upsets or injuries, and can have unusual responses to sensations/textures. He may want to put something unusual in his mouth, or rubs strings on his lips (these strings can be attached to a stranger’s pants-agh! stranger danger is something he does not seem to understand despite regular conversations).

He will sometimes drool, but mostly just has a lot of excess saliva or want to eat non-food things like putty. These are his sensory integration issues, despite significant progress through intervention. He still has very picky eating habits and can have very large and intense negative reactions to the introduction of new foods or textures. He has meltdowns (complete loss of control) over failed expectations (these can sometimes be anticipated and managed, but sometimes the expectation cannot be anticipated, i.e. he wanted a certain cup he hasn’t used in ages or we didn’t place his waffles on his plate the right way, etc). These meltdowns have shortened and lessened considerably since he was 2 years old and would have self-injurious meltdowns for an hour (talk about Mommy PTSD).

Ok, back to the meltdowns. These are not tantrums. He loses control completely. I’ve tried all of the normal behavioral interventions for tantrums, and nothing seems to work. He also has these at school sometimes over a perceived slight, and sometimes even for reasons that are not apparent. Once he begins his “defiant spiral” as I call it, stern discipline or anger makes his behavior escalate further. He will yell without words or scream at the top of his lungs, destroy his classmate’s artwork, refuse to participate, and continue to do the opposite of what is asked of him. This continues until he is able to self-regulate. This does not happen very often, fortunately.

Only kindness and patience, and/or distraction has ever worked to shorten these defiant spirals. I will tell him, “there is nothing you can do that will make me love you less.” My best guess is he gets overloaded or overwhelmed with how hard he has to work to be “typical” that he just can’t do it anymore. He has cried to me after a defiant spiral saying, “I want to make good choices” (this makes me cry every time I remember this). He doesn’t seem to be able to control himself, that’s the thing. It breaks my heart when I remember how we’ve inappropriately (but understandably) reacted to these spirals. It’s especially hard for us to understand because he CAN and DOES behave. It appears like he’s deciding not to when he isn’t making good choices (I’m sure that’s sometimes true, but it mostly isn’t true). He cannot help it.

It’s like I can see the train coming, and I don’t know how to stop it or how long it’s going to barrel through. It is the most helpless, upsetting feeling, and I really can’t even put words around it. At times, I just shut down and numb out to prevent myself from totally losing my mind. We need more skills. This is where I’m hoping ABA (Applied Behavioral Analysis) therapy can help us. We will restart OT for his fine and gross motor skills. And begin speech therapy again to help his articulation. I will educate his teachers and work out a plan to get him the extra help he needs.

Ultimately, Caleb will be able to stay in regular education classes, has a great chance of going to college, and will hopefully develop and maintain meaningful relationships. I truly believe his future is just as open as his neuro-typical friends. I do not take for granted how fortunate we are for this. However, that doesn’t take away from the fact that it will be an ongoing challenge, and he (and I) will have to continue work harder than almost all of his (and my) peers to make this a reality. I already admire and respect my sweet and special boy, but this diagnosis has made me do so even more. He is kind. He is loving. He is smart. He is strong and brave. I am so honored and blessed to be his Mommy.