I will always remember sitting at the small table with my son’s kindergarten teacher in his classroom, knees knocking, heart beating, as she gently discussed the concerns she had about my son. She handled the moment so sensitively when she suggested I have him evaluated, but it is never easy to hear something could be wrong with your beloved child. It is a gripping tension wanting to believe everything is OK when you know in your heart that the issues being discussed are real, and worrying what that will mean.
The fear that something could be wrong with your child’s development – such as autism or a learning disability – is a knot in the stomach that won’t go away till you resolve it to your satisfaction. Adding extra stress for me was the connotation and worry that the word autism brings. I didn’t know much about autism beyond inaccurate stereotypes in movies. What could it mean for my child and his future?
Here are my tips for finding out if your child has a diagnosis like autism based on my experience. (Please note: this is not medical advice, just sharing from my Mom experience.)
Assess and articulate as objectively as possible the issues you are worried about and the questions you have. Write them out and bring them with you to any appointments with medical professionals or other practitioners.
Ask your child’s care-givers or teachers what they observe, asking in as objective a way as possible. Get specific examples of behaviors or observations and facts, such as how often they see something happening, rather than just opinion.
Think through which type of professional is best to ask for advice and assessment. Identify who you think is the best person or practice to go to. This often starts with your pediatrician, but to get a diagnosis for your child of autism or another developmental issue, you would see a developmental pediatrician, psychologist or a neurologist with expertise in autism. Check to see if your insurance will cover the professional and kind of testing you want to get. Many of these professionals will have long waits of six months or longer to see them for the first time. So the sooner you call to set up an appointment the better, you can always explore different options while you are waiting. For a younger preschool child, also check whether your public school may provide any help starting at age 2.5 to 3 years old.
Other specialists such as speech therapist, occupational therapist or audiologist can also help assess and provide assistance for related issues. For advice about speech development, check out this article from speech therapist Jennifer Katz – I’m Worried about My Child’s Speech, Should I Be?
Do not google randomly as there is a lot of inaccurate or scary information and opinions that won’t help. Once your child has a diagnosis, explore helpful information from credible online sources such as the Centers for Disease Control (CDC) and National Institutes of Health (NIH), and highly regarded related nonprofits such as the Autism Society and Milestones Autism Resources that focus on evidence based strategies and perspectives. For example, Milestones Autism Resources, a Northeast Ohio regional nonprofit founded by two mothers of young adults with autism, provides this free online First Diagnosis Toolkit. The Milestones article What Is Autism? Warning Signs & First Steps is also very helpful. Be wary of blogs or sites that focus on the scariest or worse possibilities or advocate for expensive approaches or tests that are not evidence based and may be profit oriented. Bear in mind that autism is wide range from very high functioning to nonverbal with very individual differences.
Trust your gut and resist the warring temptations to over-worry or to be in denial. What do you do if the first professional you go to either gives you an answer you don’t agree with or says everything is OK when your gut says there is something wrong? This can be tough because you want to make sure you are confident there isn’t an issue after all or consider whether you need to seek another opinion. If you are told something is wrong, unless it’s pretty minor, you will probably want a second opinion. As San Francisco pediatrician Dr. Jane Anderson as parting words when retiring told my sister, “you are your child’s parent. You know your child best. When you think something is wrong, trust your instinct and don’t let anyone tell you that nothing is wrong.”
Be open if a teacher, preschool director, or other professional brings concerns to your attention. Sometimes you feel in your heart everything is fine with your child but an educator or medical professional pulls you aside to share their observations and recommend you take your child to have them assessed. It is very tempting as a parent to say, I don’t see the issue and ignore it. It’s not easy to hear feedback about your child who you love more than anything. But listen as openly you can and be honest with yourself. Ask for specific examples. As a parent who has gone through different situations and seen so many friends’ experiences, I would say, what have you got to lose to see someone and make sure everything is OK?
Resist the temptation your loved ones may have to deny something is wrong if your gut says differently. No one wants to think something is wrong with someone we love. It is easy to brush off concerns with “there’s such a wide range of what is typical” or “my child/grandchild/niece/nephew” is perfectly FINE, he/she is obviously brilliant, how could something be wrong.” But if you worry in your heart of hearts or a trusted teacher or other professional is suggesting you check out a potential concern, it is wise to do so, if only to be on the safe side. I’ve seen spouses or family members deny obvious issues for a long time, delaying important intervention and support that can really make a difference to a child and to the primary parent seeking help. I believe it’s important to be sensitive to family member’s feelings but that should not delay getting a child assessed and helped. So many developmental and related issues are best helped with as early intervention as possible. At the end of the day the child’s health and best interest is what matters most.
Keep your spirits up and stay optimistic. Hopefully you will find out that your fears are unfounded or it is a minor issue that is straightforward to address, but you will know either way that you did what was necessary to take care of your child’s needs. And if it is challenging news, it is better to know and get the help your child needs as thoughtfully and promptly as possible. We find strength inside ourselves we never knew we had when we become parents in small and big situations. Take care of yourself and try to do some fun things that make you happy along the way.
Find a community and share experiences with other families you meet who are going through similar experiences. My next article will have advice for if your child gets a diagnosis of autism. Learning from trusted sources is one way including experiences like the Milestones National Autism Conference in June which brings together parents, professionals, and experts to help people with autism reach their best potential.
Advice for caregivers or teachers who might be in the position of sharing concerns with a parent: I appreciate how difficult this must be and thought I’d share the approach that was most effective for us. My child’s teacher built a warm relationship with me and made me feel that they cared about my child so we had shared trust before any difficult conversations. Our first discussions were about my son’s strengths, then gradually, and mutually we discussed some weaknesses and issues, so that they demonstrated seeing my child as a whole person, vs. jumping to conclusions. When we had the difficult conversation, the teacher talked about his strengths and gave very clear, factual observations and examples including frequency. She answered my questions as thoroughly as possible and without using any “judgment” words about my child.
My Early Development Worries Experience
By the age of two, my sons were not speaking words and sentences the way the other children in their preschool groups were. They each showed precocious signs of their intellectual development such as my older son drawing and diagramming out The Very Hungry Caterpillar book, including writing out the words like “egg,” “cocoon,” “caterpillar.” (In fact, the first time he did it at preschool I thought the teacher was joking until she showed me and my son did it in front of me.) However only speaking a handful of words was not OK for his age so we had him assessed and indeed he needed and benefited from speech therapy. Ironically by the age of 4 each was speaking so well my husband and I joked that it seemed hard to believe we were so worried about their speech which evolved to their not stopping talking each day till they fell asleep…as if they were each in turn making up for lost time!
In our case, one son has high functioning autism/Aspergers, while the other had speech delays that were resolved with speech therapy. The son with autism was having social communication and sensory issues that my other son did not.