My Experience with Autism Thus Far

My Experience with Autism: A general overview of the knowledge I’ve gained

I recently attended a lecture on autism given by a physical therapist at Western U. The information here is garnered from her lecture. Her notes are well documented and I’ve synthesized them below. If you need any other information or want a documentation, please let me know.

When I suspected Jackson of having a disorder and when the diagnosis arrived, I didn’t know what to do. I thought of all the different connotations. Words like “special”, “different” and “disorder” suddenly hit home. It’s a severe developmental disorder and suddenly my expectations of the future, honor roll, sports star, mission, among other things, were washed away like chalk drawings in the rain. These things were still possible but suddenly didn’t seem as reachable. After wallowing in a haze about the diagnosis, I’ve learned a lot. Even as an educator I’m appalled at how little I knew about autism as compared to now and wish to dispense some of the information I’ve gained as well as lessons I’ve learned.

1. If you are concerned your child is behind, be aggressive with health professionals about it.

2. I’d like to say sorry to any mother when I thought their child was blatantly misbehaving and why isn’t the mother doing anything about it.

3. The fact that we are all children of God and any spirit sent to this earth has the capability to learn (it’s the point of this life after all).

Jackson was behind in language for a while, but every doctor (or anyone really) we talked to recommended the “wait and see” approach. I totally understand this approach. I often console others and if someone approached me with that concern I would have said the same thing. Now, refer to number one. Jackson also showed other symptoms but as a first-time parent, I didn’t really have anything else to reference his behavior against. With the prevalence of autism increasing, health care professionals should be well aware of the signals that indicate autism.

Here’s a lot of general information on autism. Read it. The prevalence (in part due to more awareness) of autism has risen. In the 1970s, two to three per 10,000 were diagnosed and now 2009 that number has grown to 1:91. It affects 4x more males than females and a new case is diagnosed about every 20 minutes. Wow! Which means, you know someone or a family or friend who is affected by autism.

What is Autism?

Autism is adevelopmental disorder. They are not sure what exactly causes autism, but the leading research is pointing towards genetics as well as perhaps an environmental cause. They also know that there are certain chemicals in the brain not functioning correctly. Since there is no test for autism, such as a blood test or genetic test, doctors have to use behavioral criteria to give a diagnosis. Now the diagnosis of ASD (Autism Spectrum Disorder) actually covers five other disorders. Think of the color red. Pink, chartreuse, maroon, burgundy and cranberry are all red colors but there are differences. The disorders that fall under ASD are Rhett’s, autism, Asperger’s, PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and CDD (Childhood Disintegrative Disorder). Only CDD and Rhett’s are digressive (meaning the kid is fine and then suddenly loses those skills mostly characterized by hand wringing and a stiff, rocking gait). PDD is kind of the diagnosis when they really don’t know what else it is, but that it’s autism. Asperger’s is high functioning. Those were the nerdy kids that didn’t really have any friends, were super smart, but really, really, really awkward. I’ll explain why they’re so awkward later on. Then there’s Autism, which is also over a spectrum. This information will mostly cover autism.

The Autism Spectrum

There are four different “categories” (I use that word loosely) of autism (specifically the disgnosis "autism" not "ASD"). It’s called a spectrum disorder for a reason. There is passive, active, high threshold (for sensory stimulation), and low threshold. So you can get High/Passive, High/Active, Low/Passive, or Low/Active. In each category the behaviors are manifest differently.

High/Passive (Low Registration): Non-reactive, withdrawn, lethargic, un-interested; rx: increase contrast and decrease predictability of activities

High/Active (Sensory Seeking): Impulsive, excitable, always engaged; rx: feed the need

Low/Passive (Sensory Sensitivity): hyperactive, distractible, difficulty staying on task; rx: organize input, provide choice and decrease the density of stimuli

Low/Active (Sensory Avoiding): uncooperative, won’t participate, Rule-bound; rx: honor discomfort, increase routines, increase predictability

Of the four, each child will gravitate towards one area. For family, you should know which area Jackson falls into. I’m pretty sure he’s sensory seeking. He is always on the go, loves big hugs, crashing into things, hiding under pillows, etc.

So how do you get the diagnosis for Autism?

To receive a diagnosis of autism, a child must have at least 6 of the characteristics in three different areas:

1) Impairment in social interaction manifested by the following: lack of social or emotional reciprocity, impairment of non-verbal behaviors (eye contact, facial expression, body language), and lack of “sharing” like bringing objects to show, pointing out objects.

2) Impairment in communication manifested by the following: delay in, lack of spoken language with no attempt at gestures to compensate; impairment in holding a conversation-like dialogue, repetitive use of language; lack of spontaneous, varied, pretend play or social imitative play appropriate for age.

3) Restricted interests manifested by the following: preoccupation with parts of objects, repetitive motor movements (hand-flapping, running in place, complex whole-body movements); inflexible adherence to routines.

Basically, lack of language, eye contact and extremely narrow interests or “self-stimulating (stimming)” behaviors might indicate that your child has ASD. It’s difficult for first-time parents to notice these signs because it’s their first kid. So health professionals should be aware that these parents don’t have a norm to reference concerning kid’s development. If it hadn’t been for Jackson’s lack of speech, we wouldn’t have worried.

Autism affects the brain’s ability to process information. For example, people with autism are unable to ignore the feeling of clothes on their body, or the sound of the fan.

In addition to dealing with processing difficulties, people that have ASD usually deal with other disorders: ADHD 28%, OCD 19%, anxiety, depression 15%, Sensory Modulation Disorder, and epilepsy 25%, and MR 20%.

There are so many different causes for autism that they’ve been able to identify. Some of them are genetic and some are environmental. THE THEORY THAT AUTISM IS CAUSED BY VACCINES IS FALSE. The group that performed the study has retracted their claim and the leader of the group has had his license revoked due to unethical practices.

Children that have autism develop all over the map. They may gain certain skills while not developing others. For example, a child with autism may be able to skip, but is unable to balance on one foot. Assessment of ASD’s must be comprehensive and involve multiple disciplines and a collection of information across people and contexts. Who should be involved? Speech therapists, occupational therapists, behavioral therapists, teachers, special Ed teachers, parents, pediatrician, and the neurologist and physical therapists. That’s a lot of people!

I’m not going to go into the different ways to assess your child if you think they have autism, but I will list some assessments you should check out: CARS rating system (Childhood Autism Rating Scale), CHAT (Checklist for Autism in Toddlers), Autism Treatment Evaluation Checklist, Social Communication Questionnaire (previously known as The Autism Screening Questionnaire), ADI- Autism Diagnostic Interview-Revised, and the Autism Diagnostic Observation Schedule.

Why Should You Get Your Kid “Labeled”

Back in the day (as in our parents’ day), labels were bad. Now, labels are good because then it’s documented and your child is able to receive all sorts of therapy for free as well as an IEP. An IEP is an individualized education plan and teachers are required by law to adhere to it. It is individual, but some things the teacher may be required to do are: when giving instructions repeat eye to eye for the child, stand by their desk when instructing, reword instructions in a specific way, allow for more time for assignments, etc. LABELS ARE NOT BAD. I say this about ANY DIAGNOSIS!

If You Suspect…

Talk to your pediatrician and demand your child be evaluated by the proper professional: a pediatric neurologist. That's about as official as you can get.

What You Can Do At Home

Work on eye contact, interrupt repetitive behaviors, simplify your sentences, try and get them to point, consider using sign language, allow them to tantrum and make them use their words…be creative. That’s the biggest thing I’ve learned is to be creative. Use things that they are interested in and then draw them out.