Each child has his/her own story which unfolds in an intimate juncture and impacts their life well before an autism diagnosis is given.
How do you prepare for a journey that takes a left turn when straight is the only paved road and your head is drowning in more questions than answers?
My son hit most of his developmental milestones approximately within the target age, so although he did show slight delays in language there were no significant red flags. Since walking age, he showed repetitive behaviors such as flapping his arms and tensing when he was excited. However, I had not yet made the connection to autism.
Then around the age of two, taking him out in public became increasingly difficult. Strangers and familiar faces would yield terrorizing screams. His social anxiety became so extreme that I dreaded taking him out of the house.
As quickly as his behaviors manifested, they also grew in intensity. At that point, I knew something wasn’t right.
What steps do you take when your child begins exhibiting behaviors characteristic of autism spectrum disorder?
Here are helpful tips to approach this overwhelming question. These three steps are taken from what I have learned along the way as an autism parent.
1. Observe and Note-Take
Your child lines up his/her toys. Maybe he/she has a fixation on a specific interest. He/She demonstrates repeated behaviors yielded by similar situations. Smells, sounds, and textures all seem to be heightened, causing sensitivity to these sensory stimulations.
Take notice of the patterns and interests of your child and jot them down. Create a notebook divided into sections to help organize the observations of your child.
These sections can be arranged by what is most relevant to your child and may include but are not limited to:
- Behaviors (i.e. stimming, meltdowns, putting non-edible objects in the mouth, etc.)
- Sensory Sensitivities (i.e. bright lights, loud sounds, clothing textures, etc.)
- Food diet (you can keep a food journal showing your child’s daily diet)
- Sleep patterns (notes can include the average amount of sleep each night, any problems with sleeping, does he/she need a sound machine or night light to help soothe them?)
- Social skills (i.e. does he/she show a lack of interest in playing with other peers, problem-solving, is he/she attuned to others’ body language)
Take notes of your child’s meltdowns by detailing the following:
- Give clear facts about what you believe led up to your child’s behavior
- How did your child respond? (i.e. kicking and screaming on the floor, hitting his/her head, covering his/her ears, etc.)
- How long did it last? Include if there were any stages to each response (i.e. he/she hit his/her head with his/her fists for 5 minutes, then began screaming, etc.).
- What did you (parent) do to calm him/her down? What was his/her response?
- How often does your child have meltdowns?
Although tedious, having a dedicated and organized notebook will act as your autism parent go-to tool. Whether filling out a questionnaire at the doctor’s office, undergoing an assessment with the clinical psychologist, or building an Individualized Educational Program (IEP), you can ease your anxiety knowing you are always well-prepared.
2. Make an Appointment With Your Child’s Doctor
Once all your notes are in order, it’s time to meet with your child’s health professional.
In my situation, my son passed the “M-Chat”, a screening tool that assesses the risk of autism spectrum disorder. If your child has high-functioning abilities, it is highly plausible to pass this screening tool without giving the doctor any warrant for concern. It is important to know the M-Chat is not foolproof; as we know for any autism diagnosis: no such test exists.
It was up to me to bring the support and evidence showing a valid reason to have my child further evaluated for autism.
With the information gathered by your child’s doctor, you should then receive a referral for an autism evaluation.
3. Autism Evaluation/Assessment
Every state has its own services for assessing a child for autism. In California, there are 21 Regional Centers that are state-funded to provide a free medical autism assessment, but before they can appoint a clinical psychologist to conduct the evaluation your autism clinic will require additional information.
Again, have your notebook readily available when you make your phone call so you are prepared for any questions they may ask.
Within a couple of weeks, we met with the in-take coordinator of our Regional Center in a face-to-face meeting with our son while they gathered additional information prior to determining a date for the evaluation with the assigned clinical psychologist.
Be prepared if your child is of school age, they will most likely have to miss a few hours of school to complete the evaluation. If a note of absence is necessary, be sure to request one either from the clinical psychologist or your Regional Center.
Once the evaluation is completed, you will meet with the psychologist while they discuss the overall findings. In the coming weeks, an official written assessment from the clinical psychologist will be mailed to you for your records.
Whether you are a resident of California or another state, the general process is similar, though your point of contact will vary.
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The important steps as highlighted are to create a detailed notebook of your child, connect with your son or daughter’s physician to address the concern, and lastly seek the right referral with an experienced clinical psychologist or autism center to evaluate your child.
My son is now nine years old and has been through two clinical evaluations. I remember his first evaluation like it was yesterday leaving the office with his ASD diagnosis thinking “Now what?” I was simultaneously relieved to have a tangible explanation and scared for the future ahead.
It has been six years since that moment. It has been a parenting rollercoaster of drops and climbs, laughs and tears mixed with mini-monumental moments that we celebrate in a grand fashion.
Always trust your intuition. Your strength is their pillar. Be their beacon to light their way
National Autism Association. (n.d.). Retrieved from, http://nationalautismassociation.org/about-autism/autism-screening/
This article was featured in Issue 98 – Fresh ASD Guidance For A New Year