When Your Child Is Evaluated For Autism: Tips From Lauren

Given the high rates of autism spectrum disorder (ASD), parents should be aware of the early signs and symptoms that emerge in the first two years of life. There are many good guidelines that highlight the developmental red flags that could require further evaluation. But what about the process of going through an evaluation – or multiple evaluations? This is difficult – both emotionally and practically – and it would be helpful to have some guidance from a mom who has done that. 

To that end, I am introducing Lauren, a mom who’s son AF has been diagnosed with ASD. Lauren is a certified special education teacher with an advanced certificate in Applied Behavioral Analysis, so she has experience both as a professional and a parent. Today she is sharing her “insider’s view” on the evaluation process along with tips for parents who are (or will be) going through this:

Recently a rerun episode of Law and Order SVU brought up a key issue that totally connected to me and everyone else that is going through the evaluation process.  The psychologist on the show was talking to Detective Benson about having a mother whom was an alcoholic. Detective Benson said: If you talk about it out loud then you are admitting that it is happening, that there is a problem. It reminded me of when the first evaluation for AF was taking place four years ago – especially all the questions I was given and how my answers were so ambiguous and now I can say that is because I was afraid to admit that the disability was real. So, based on my experiences, here are some recommendations for the evaluation process.

Never say sometimes – give yes or no answers only. I would answer so many of the questions with the word, “sometimes.”  However, by giving answers that were not truly accurate, these evaluators may give you a false sense of hope.   For example, if the question is “Does your child get an object if you ask him/her to get it?” your answer should be yes or no.

Tell about any odd behaviors you may see even if not seen by that evaluator. Autism is not something you can determine by a blood test.  It needs to be diagnosed through direct observations.  However, the day the therapist comes in, your child may not be exhibiting the usual behaviors.  You may think “Maybe I’m wrong, maybe these behaviors aren’t always occurring.”  If you feel the therapist is not seeing your child in their true form, show video, and/or describe the behavior to the best of your description.  For example, AF would like to look at the window and stare while squinting his eyes – this is a form of stimming (self-stimulation) known as sighting.  However it only occurred when it was foggy outside, and it was sunny the day of the evaluation.

Listen to your gut feeling and don’t give up on getting an answer. The first two therapists told me my son was not going to require services.  Wow, I remember feeling happy – yet confused and in fact more anxious.  I even took him to a different doctor to be told that his son didn’t speak until he was 4 and he’s a lawyer now, so not to worry.  Thank goodness for the third, the speech pathologist who came in and saw some of my concerns and she recommended the psychological evaluation which did confirm my gut instinct – ASD.

These tips from Lauren are especially important because early intervention typically leads to notable improvements in behavior. Furthermore, as the causes of autism remain a mystery (click here to read more about the ground breaking twin study that I selected as 1 of the 6 most important studies of 2011), the most proactive thing parents can do is seek out evaluations if they see potential signs of ASD – and keep in mind these suggestions that can help you get through this.

Image of doctor and mom with a son via Shutterstock.com

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  1. by crystal

    On December 21, 2011 at 10:49 am

    My oldest son, who will be 5 next month, was diagnosed at 2 1/2. I was being told that he only had a speech delay, but something kept telling me that something wasn’t right. We had him evaluated anyways and sure enough, he had autism. Now, many people cannot tell that it affects him. Early intervention is the key here. The earlier they can be diagnosed, the better their chances are.

  2. by Clementine Kruczynski

    On December 21, 2011 at 11:16 am

    We started the DX process when my son was 16 months old. He’s now 3 1/2, and after a year and a half of intensive therapy he’s reading on his own, and started sight reading around a year ago.

    Regardless of if you think there might be something going on with your child or not request a MCHAT screening to be done at 2 years. It’s a simple questionair that will take all of 15 mins to fill out. If your doctor won’t do one you can find them online all over the place for free. This is you’re first test that will answer your questions about if something is going on with your child.
    If that test comes back with even a possibility that your child might have Autism, ask for referrals to a Developmental Pediatrician. They are your first step to figuring out what is, or isn’t, going on with your child. They will help you figure out what other testing is needed. Some DX are made only from the ADOS (professional standard test for DX Autism disorders) others, like my sons, are done over 2 days in the same week. Lots of testing was done, I honestly couldn’t ell you how many tests we did for our DX, but I can tell you it was at least 5 or 6 minimum.
    A Developmental Pediatrician can also help you find the right place for your child to have therapy evaluations. You’ll want to call everyone as soon as possible if your first set of testing comes back that you need further screening. Wait lists for Speech, Occupational, and Physical therapy can be anywhere from a few weeks to months.
    Don’t be afraid to find a different therapist or doctor is you honestly don’t feel that they are the best fit for your child.

    Above all else, try to not stress out too much. Autism is a treatable condition. Many children learn to manage their symptoms and are able to lead a normal life. You’re support system needs to be there for you, but hopefully in an understanding way. Good luck! It’s a different, but usually amazing, journey. You will meat some of the most amazing children and parents. Most of the time you’ll find you fit in wonderfully with them, and are accepted from day one.

  3. by mary daniel

    On December 21, 2011 at 12:32 pm

    My daughter was diagnosed at age 6 as being high functioning. I always knew there was something “special” about her. She started preschool at 3 yrs of age and the teachers knew right away that she was different from the other kids. We had a meeting to discuss getting her the help that she needed and from that day on she has made such miraculous changes. She still has a long way to go. But for those who don’t know her, they can’t tell that she has ASD. I absolutely agree that early intervention is key. I knew early on that my daughter was autistic, but because she’s very smart, I couldn’t get the answers I was looking for. Finally, a visit to a ASD specialist at Lucille Packard at Stanford in Palo Alto confirmed my suspicions. As a parent, you are the only voice your child has. You know your child better than anyone. Being persistent and working alongside your childs doctors and teachers can make a world of difference in your childs treatment. I see that difference in my daughter every day. She amazes me everyday!

  4. by Christy

    On December 22, 2011 at 1:11 pm

    early intervention “can” be key, or, it can just let you sleep at night. my daughter is severely autistic. i had a home program going for her at age 2, months before i could get our school district, or private insurance to come to the table. she has no speech, cannot sign, and functions at about an 18 month old level. because of her being aggressive to her caregivers and siblings, she has been in a care facility for the past 4 years. is this the life i dreamed of for her, wished for her, wanted for her? no. but knowing i keft no stone unturned, fought every battle and tried everything available allows me look in the mirror everyday with peace. the sad fact is; some children don’t make measurable gains. no one every suffered from too much early intervention. don’t wait if you suspect your child might need help.

  5. by Bruce Dolin, Psy.D.

    On December 27, 2011 at 10:14 am

    A friend and colleague, Esther (Estie) Hess, Ph.D. [http://bit.ly/rBIAFp} talks about working with “kids with stuff,” meaning not all children fit into a neat diagnostic category, yet may still have struggles related to autism spectrum disorders.

    As a parent I am well aware of the racing adrenaline and heart in our throat feeling that comes when an “expert” sees red flags for issues.

    Yet I am also aware that early interventions with issues related to neurologically/developmental differences bearing on social relatedness can have huge impacts, particularly when applied during times when the social brain is still forming and developing.

    Dr. Hess emphasizes breaking the self-enclosed loops of play and forcing the child to interact—lovingly and insightfully done, of course, to activate and stimulate the sort of relating that neurotypicals consider “normal.”

    Still, as Christy’s comment above illustrates, a child’s level of potential functioning can be limited by their level of cognitive intelligence, and this can be terribly heart-breaking (and a good time to be there as parents for each other with love and compassion rather than “expertise” or judgment).

    Autism can coincide with severely limited cognitive function as well as with extraordinary levels of specific intelligence (sometimes seen in Aspergers in particular). As a parent you want to find a team of helpers who can work with you and your child to help form a multi-disciplinary approach that is respectful, loving and inclusive. I’ve seen many parents feel that they themselves were transformed, and often in a positive way, for the blessing/burden of a child with these sorts of differences.

    Finally, I like to stay open to the possibility that children with such differences may still have much to teach us, maybe not about science and innovation, but about love and our sense of who we are as humans (and where we might be going. For more on that sort of thinking: http://bit.ly/uSBBXU

    Namaste, Bruce