How to Prepare for Your Child's Autism Evaluation

THIS IS NOT A MEDICAL DIAGNOSIS OF AUTISM. I AM A MOM SHARING MY EXPERIENCE GOING THROUGH AN AUTISM EVALUATION. IF YOU THINK YOUR CHILD HAS AUTISM, PLEASE CONSULT A DOCTOR.

The numbers state that 1 in 100 children has autism. I never in a million years would have thought that I would have a child with autism. I think around my son’s first birthday, reality started sitting in my gut so deep that Jasiel may be autistic. There were one too many, “Oh he isn’t doing that yet”. Shortly after, maybe 6 months later, during a routine 18 month milestone checkup, the milestone boxes I left empty were overwhelming.

His pediatrician noticed his “stimming” behaviors that I had passed off as just things little boys do, coupled that with his developmental delays, and said the unimaginable. “Mommy your son has autism, I’m going to refer you to a psychotherapist to have him formally diagnosed so that you can begin getting support.

I navigated so much of this alone that I feel a duty to be a support or a resource for another mom. If you have ever heard those same words but yet haven’t taken the steps to get your child evaluated, here are a few tips to prepare for your child’s autism evaluation.

Autism short for 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. I still can’t put my hand on the actual cause or problem. Autism is such a wide spectrum. At its foundational core, it is caused by differences in the brain, making it difficult for a child to display expected behavior by a specific age.

If you are preparing for your first of a few evaluations, here is what you should do and expect.

Gather your child’s medical history and progress

Just to let you know we had a couple of assessments and evaluations over time. Usually, the autism evaluation begins with a screening questionnaire. The therapist will ask you a series of questions about development, communication, and behavior while also watching the child play either by themselves or with someone. This is your opportunity to share videos of behaviors the child may not display while he is in the office.

Your child’s medical history from the time they were born may help the assessment. The therapist charts all of the developmental progress from the time your child is born, which allows the specialist to make an informed assessment. It would be helpful to include the results of any previous developmental or behavioral screening.

I know I mentioned to the therapist that at the time of Jasiel’s birth the nurses thought that he may have a hearing issue. Therefore, during his autism assessment, we went for a hearing screening to rule out any communication issues associated with autism to hearing problems.

If the assessment determines that the child has autism, you will have to go for a more in-depth evaluation. The DSM-5 lists the signs and symptoms that must be present to diagnose a child with autism and warrant a more in-depth clinical diagnosis.

Document your child with video

You know your child better than anyone else. You also spend the most time with your child so your observations are very important for the autism assessment. Be sure to document their daily activities, attempts to communicate, socializing with other kids, and any behaviors.

Here are a few things to look out for that you may want to show your therapist if they ask.

• someone calling your child’s name and they fail to respond by turning to you and doing what you ask

• spinning in circles, spinning objects, repetitive behaviors

  
  

• inability to point

• lack of eye contact

• difficulty transitioning routines

• being fixated on an object or a toy

• not talking or only saying maybe 3 words

• lining objects up

• being destressed by sounds or crowds

I do want to make sure you remember that all children develop at different times and hit milestones differently. Even if you say Oh my God, my child does that from the list above, it doesn’t confirm that your child is autistic. Only a therapist can diagnose your child with autism.

However, don’t ignore these as just things kids do. Record all of the signs so that you can show the therapist during the assessment.

Be Informed Ahead of Time of what an Autism Assessment Entails

I wish I would have been a little more informed prior to the assessment. I was so overwhelmed with just accepting it, that I had no idea of all of the tests and follow ups.

The assessment includes an interview with you, the parent, and the child. Your child may be asked to complete one or two cognitive tests. The specialist will administer the Autism Diagnostic Observation Schedule (ADOS), a diagnostic test where your child will perform a series of simple tasks like timed puzzles or pass the ball.

Walking into an assessment without knowing that your child is expected to perform specific tasks or take a test may catch you off guard. Oh, keep in mind the evaluation may take several hours or more than one session. If you are a worrier and anxious, like me, I want you to be prepared that you will not get your full results on the same day. You will be scheduled to attend a feedback meeting after testing to review the results of the evaluation, explain your child’s diagnosis (normally the question most ask '“what level of autism”) and recommend treatments such as ABA therapy and speech therapy and ways to help your child at school.

I suggest that you may browse around YouTube or read different blogs that show an in depth autism evaluation. I was very leary and honestly hesitant of documenting the process so I don’t have much to share.

Try to Find A Support System

If you are feeling worried or emotionally exhausted by the idea of your child having autism, I understand. There are so many things we worry about and they are rightfully justified. I will not tell you that life doesn’t change or that you will have to accept a new normal. You will. But, you don’t have to do it alone and you don’t need to.

You will be worried constantly about your child’s future. Yes, you will be worried about how people treat you all in public. And, yes there will be a lot of unknowns and things that you never thought you would have to deal with or will continue dealing with as your autistic child becomes an adult with autism.

But, find support. Support may be in the form of a therapist, counselor, family and friends, or Facebook groups with parents that have gone down this road a few steps ahead of you. Speaking to them about your worries and ask for their suggestions or resources.

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Preparing for your child’s autism assessment doesn’t have to be a scary process. It will call on you to be ready mentally and emotionally but you can do this. Going into the assessment with some of these tips hopefully will take away the surprise element.