A little about where we have been…

…and then it’s all about where we are going!

Living with autism did not begin for us the day we received Wilson’s autism diagnosis. He was the same boy the day before the diagnosis as he was the day after. For us, the journey to discovering this diagnosis began last summer when an educational specialist from the school district brought to our attention that she noticed red flags for autism in Wilson. At that time, Wilson was receiving Early Intervention from the school district for speech delay. Autism had kind of been on my radar, though I didn’t know very much about it. I was just a new mom, worried that her son wasn’t talking or socializing in the same way as other kids his age.

This news about autism red flags was crushing. It’s one thing to have a worried feeling in a very distant part of you, but a whole different thing when someone you barely know confirms that these worries are very real and valid. I knew next-to-nothing about autism besides that it scared the shit out of me. I immediately consulted Dr. Google and found that there was no cure.  For several weeks, I could not get past that. I felt like Wilson had been slapped with some kind of life sentence. And we had too.

We immediately began weekly speech therapy again (he had done it for a few months when he was two) and occupational therapy followed for motor planning issues. This is when my hatred for waiting lists began. The months that followed were filled with a “hurry up and wait” mentality. We were rushed to get Wilson the early intervention he so desperately needed and that his specialists recommended, but were plagued by waiting lists at every turn. Developmental Pediatrician, Psychologist, insurance, Educational Autism Evaluation, results, Psychological Autism Evaluation, results, Naturopathic Physician, blood and urine testing, results. There was always a long wait for something. It was torturous at times.

Here is what they don’t tell you about early intervention: the earlier you “intervene”, the harder it is to know what you are dealing with. For MONTHS we were back and forth on whether or not Wilson truly had autism. And so were the professionals in that field! Talk about a confusing, rollercoaster of emotions. We went through it all: denial, pessimism, optimism, sadness, hopeful, mad, exhaustion, scared.  So scared.

Eventually, with the diagnosis, came acceptance. Which felt somewhat like relief, given the confusing months we had all been through. We found a path, developed a treatment plan, and hit the ground running. We met with a Naturopathic Physician that specialized in autism. She helped us look at Wilson’s health as a whole and what types of deficiencies and ailments we could address to make him feel better physically.  We started him on the gluten-free/casein-free (GFCF) diet (more on that later). We also removed some of the added sugars and food coloring from his diet. 

Some of these changes weren’t going to be easy, given his extremely picky and limited eating habits. We started him on some vitamin supplements, fish oil, a probiotic, a botanical digestion supplement, and last but not least, Methyl B12 injections (lots more on this later). Slipping things into my child’s meals and sneaking into his room in the middle of the night to give him an injection in his sweet, perfect little bottom is definitely not where I saw this motherhood thing going.  I’m willing to try anything (within reason) to help my boy.

Wilson started Applied Behavioral Analysis (ABA) in July and it’s going great so far. ABA is the application of behavioral principles of learning and motivation to the improvement of socially significant behavior.  In short, his therapists study certain targeted behaviors and figure out the root of why these behaviors are occurring. Then they use these behavioral principles to increase or decrease certain behaviors as well as teach complex skills in areas such as communication, self-help, play skills, and self-regulation.  He is working hard, learning so much and the best part: he loves going there.  I’m looking forward to sharing more about his ABA experience in the coming months!

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What is autism? And how does it affect Wilson?

Autism Spectrum Disorder (ASD) is the name for a group of developmental disorders that affect communication, social development and sensory processing.  For Wilson, verbal communication is very limited and he can’t always “find” words to express himself and in turn can have difficulty regulating his emotions.

  • Often repeats phrases he learns from cartoons (scripting). In the realm of language, he has always excelled with numbers and songs, because they are the same every time; reliable and easier information for him to access.
  • He tends to scream when he is frustrated vs. using words to express his emotions or desires.
  • Repetitive use of words and sounds non-communicatively (self babbling).

It constantly amazes me the phrases Wilson will learn from his cartoons. Especially when his vocabulary was so limited (he has continually improved his vocabulary in the past few months). Sometimes he is able to generalize these learned words or phrases into correct situations in real life, and sometimes he sounds like he is in another world, reliving scenes from a favorite show, usually at a very random time. One of his favorite shows right now is Dora the Explorer, which includes lessons on Spanish language and culture. The other day he said “Hola! Soy Dora. And I’m boots!” It was adorable but made me think about how odd it was that he can say that in Spanish but not “Hi, my name is Wilson” in English. We’re working on it though!

Social development has been another challenging area for Wilson. One of the harder things for us to see is that he wants to play with others, he just doesn’t always know how to initiate or participate like other children his age.  Often times he can appear aloof or indifferent and it looks like he is ignoring people. Social interaction can be overwhelming for him because he doesn’t always interpret gestures and subtle facial expressions correctly (or at all). We’re learning that many subtle social cues and skills need to be actively taught to Wilson, whereas other children seem to pick them up naturally.

Since Wilson has difficulty regulating his emotions in frustrating or overwhelming situations, he may lose control and have inappropriate outbursts, crying/screaming tantrums and start hitting others or throwing things. In the same realm, Wilson can have difficulty and anxiety dealing with other people’s emotions.  Intense emotions can make him uncomfortable because he doesn’t understand them.

  • His eye contact is minimal. Even if he does communicate with a person, he doesn’t always look at them while doing so.
  • He shows more interest in objects/individual activities than engaging with other people.
  • He can appear aloof or indifferent to anyone depending on his day and mood.
  • Does not understand how his actions affect others.
  • He can get overwhelmed easily.

Repetitive behaviors and sensory processing issues were some of Wilson’s main ASD red flags. Repetitive behaviors can include (but not limited to) repetitive movements with objects, repeated body movements, ritualistic behavior, sensory sensitivities and intense preoccupations.  Also, echolalia, which is the repetition of a single word or phrase. For example, sometimes when I say “Bye, Wilson!” he’ll say “Bye, Wilson!” instead of “Bye, Mama!”

Adhering to plans and routine is another area of importance for Wilson. In comparison to some autistic children who often need absolute consistency in their environment (a slight change in any routine — mealtimes, school preparation, or going to school at a certain time and by the same route — can be extremely disturbing to them) Wilson usually shows some more flexibility in this area. He does, however, thrive on routine and knowing his plans in advance.

Wilson has had a few persistent, intense preoccupations over the past year or two. Some examples are elephants, keys, pirates and trains. He likes to collect them, point them out when he spots them and, unlike other toys, games, etc., his intense interest in them has remained constant over time. We literally have to hide our car keys from him, and he has one giant key from his grandma and grandpa’s house that he likes to sleep with at night (and of course his beloved stuffed Dumbo).  One theory is that children on the autism spectrum experience a lot of anxiety and a preoccupation can be calming because of its familiarity.

  • Stimming: spinning, hand biting/mouthing objects, head bumping
  • Scripting/echolalia
  • Repetitive/rote play
  • Rigidity- has a very hard time transitioning from a preferred activity to a non-preferred or unfamiliar activity.
  • Lining up/sorting toys; hoarding objects/toys
  • Intense interests/preoccupations

Dysfunction within the sensory processing systems can present itself in many different and opposing ways depending on the person. With Wilson, he has shown dysfunction with motor planning. This is the ability to plan and execute different motor tasks. This can affect him both with verbal communication as well as activities such as playing with new toys/games or getting dressed.  A variety of sensory processing difficulties arise for him throughout the day so his mood can be very unpredictable.

  • Displays sensory-seeking behaviors such as movement (running, spinning, bouncing); hyperactive
  • Seeks pressure (bumping into people or objects, calms with tight hugs, like to be wrapped up in tight blankets)
  • Avoids certain textures in food, clothing and touch
  • Motor planning- struggles attempting (planning and executing) new tasks so avoids them and prefers repetitive (known/safe) actions and play
  • Does NOT like hair combed or cut

It’s important to remember that people with autism are all unique individuals, just like you and I. Every person with autism is different, as are their behaviors and challenges. I never want Wilson to lose his individuality in this label.

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