Could My Child Be on the Autism Spectrum?
By the age of 2, my sons were not speaking words and sentences the way 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 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, he only spoke a handful of words for his age, so we had him assessed and indeed he needed and benefited from speech therapy. By the age of 4 both of my sons were speaking so well my husband and I joked that it seemed hard to believe we were so worried about their speech.
In our case, one son has autism, 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.
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. 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 if you suspect your child could be on the autism spectrum. Please note, this is not medical advice, just sharing from my experience.
1. 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.
2. Ask your child’s caregivers or teachers what they observe as objectivly as possible. Get specific examples of behaviors or observations and facts, such as how often they see something happening, rather than just opinion.
3. 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 an autism diagnosis for your child, you would see a developmental pediatrician, psychologist or a neurologist with expertise in autism. Other specialists such as speech therapist, occupational therapist or audiologist can 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?”
Check to see if your insurance will cover the professional and type of testing you want to get. Many of these professionals will have long waiting lists to see them, so the sooner you call the better, even if it six months from the time you call. The public school system may provide some help with assessment starting at age 2.5 to 3 years old.
4. 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. Also check out the Autistic Self Advocacy Network.
5. 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 going on? This can be tough because you want to make sure you are confident there isn’t a diagnosis or consider whether you need to seek another opinion.
6. 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 as 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 a professional and make sure they meet your child?
7. Resist the temptation your loved ones may have to deny something is different if your gut says the opposite. 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 different.” But if you worry in your heart and 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 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 supports put in place. 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.
8. Keep your spirits up and stay optimistic. Perhaps you will find out your suspicions 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 your child is diagnosed, it is better to know and get the supports 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.
9. Find a community and share experiences with other families you meet who are going through similar experiences. 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.
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 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. 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.
A version of this post first appeared on Gooseling Parenting Blog.