Stop telling worried parents that Einstein didn’t talk until 4 and start giving them practical advice.

On parenting message boards, facebook groups, and elsewhere online, I see posts by parents concerned about the development of their children and, at one time, I was making those posts. Even in groups populated by well-educated, well-informed parents, it is quite common for these concerned to be brushed off as parental worry.  I’ve seen and received (and at one time been guilty of) comments such as:

“Every child develops at their own rate.”

While that is true, some children have developmental disabilities that interfere with their ability to learn. Many studies suggest early intervention can help protect against some of the debilitating effects of autism. The difference between my son before and after his diagnosis and therapy is night and day. Waiting would have only harmed his outcome. I have never heard a parent say that they wished they hadn’t sought out early resources for their child, but I’ve known plenty who wished they had.

“If the pediatrician isn’t concerned, then you shouldn’t be.”

After my son’s second pediatrician kept dropping the ball as much as his first, we moved to a third one. At our first visit, the new doctor asked if a referral had been put in to a developmental pediatrician. I had never heard of such a doctor before. Considering that many developmental pediatricians have a 9 month or longer wait list, the sooner a referral is placed, the better. If I hadn’t been able to get in early on a cancellation, my son would have missed 4 months worth of therapy. That might not seem like much, but it can mean the world to an autistic child.I know several parents who were put off seeking Early Intervention by a pediatrician who insisted everything was fine.

This study found that

Zuckerman compared the information for children who were eventually diagnosed with an autism spectrum disorder to children with an intellectual disability or developmental delay, two other intellectual problems that first show up in early childhood. About 14 percent more of the children with an autism spectrum disorder received a passive response from the health care practitioner, and were diagnosed about three years later than the children with other intellectual problems.

“Don’t contact Early Intervention unless there is a very serious concern or the pediatrician gives a referral. You’ll be taking resources from someone who needs them.”

My early concerns seemed so minor, I almost convinced myself it was all in my head, especially when my autistic son cleared his first Early Intervention screening. It nagged at me and ate at me and I requested a second screening and during that screening, I said every little concern I had, even though I felt foolish pointing out things that weren’t on their charts. That’s when they recognized some issues and he started services through the Early Intervention program. It was our long involvement with that program that allowed him to be diagnosed at 17 months. If I had waited, we would have lost valuable time. You might not know you need the services until you qualify for them.

In this informative reddit thread, the OP notes: In 15+ years of working with children, and 5 years of being a parent, I have never heard a parent say “I wish I hadn’t bothered getting that free Early Intervention assessment when I was worried about my kid.”

“Speech therapy can’t start until after 18 months/2 years.”

I see a lot of misinformation about when certain services can start. While lack of expressive language (how much they can speak) isn’t a concern until later, lack of babbling and receptive language (how much they can understand) is. My son was enrolled in speech therapy at 15 months due to lack of babbling and receptive language and other parents have begun even earlier. Even if your child isn’t behind enough to qualify for speech therapy, a good pediatrician can give you information on how to encourage speech. My son started occupational therapy at 10 months.

“They can’t diagnose autism until after 3.”

With a family history, children as young as 12 months have been diagnosed with autism. My son was diagnosed by the MCHAT at 17 months and that extra time has made a world of difference.

“All parents worry.”

Yes, to some extent, all parents worry about their children. I worried about the development of my neurotypical son and had him screened by Early Intervention. I’ve been concerned with his speech on 2 separate occasions and got a referral to a speech therapist from his PCM on one of those (he wasn’t delayed enough to need services), and the other time, I asked his twin’s speech therapist for more information on how to help him. Just as many other parents assured me it would, his speech suddenly exploded.

In my most active parenting group, many of us have been worried about all sorts of things, especially if we are first time moms. Most of us have expressed concerns about language and about 1/3 have had concerns about autism. Many experienced speech explosions and most of our children have been on a very normal trajectory. Still, in a group of about 50 moms, there are several of us whose children qualified for speech therapies, and 3 of us have had referrals to developmental pediatricians because of serious concerns. With rates of children diagnosed with autism climbing to 1 in 68, it is reasonable to assume that a diagnosis is possible, especially in larger groups.

Let me be very clear. I’m not saying that some parents aren’t worrying unnecessarily. I’m not saying that all parents who suspect their child of having autism are right. I am not saying that reassurances should never be stated or parents shouldn’t mention speech explosions. I am simply saying that I, and many other parents who have good reason to be concerned, are regularly dismissed, and that posters focus too heavily on reassurances instead of giving practical advice.

Instead of telling parents about Einstein, here is what we should be saying:

“Have you mentioned your concerns to the child’s doctor?”

Even the least informed pediatricians will run a basic hearing test and examine the child to make sure chronic ear infections or something else isn’t getting in the way of development.

“Have you taken the Ages and Stages Questionnaire (ASQ) or something similar?”

Not all pediatricians use these measures, but they should. The ASQ [link to PDF of master list] is a parent-completed child monitoring system that can help identify areas in which the child is lagging compared to peers. It is easy enough to fill out and score (I will gladly help anyone who is struggling). If a child is scoring in the black, a call for Early Intervention should be placed immediately. Alden has scored in the black and not qualified for Early Intervention, so it is not necessarily a sign of a problem, but many children with developmental disorders start out closer to their peers and a delay should be examined by a professional.

“Does your child share any characteristics mentioned in lists of early warning signs of autism?”

My autistic son smiled and imitated before his neurotypical twin and had excellent eye contact from a distance. Since I didn’t know much about autism, I thought his early and often social smiles, imitation, and excellent eye contact as long as I wasn’t very close to his face meant that he didn’t have autism. When my boys were around 9 months, I watched this video on early signs of autism and, even though my boys were younger than the children depicted in the video, I worried that Corwin had autism based on his preoccupation with certain toys, lack of response to his name, and lack of joint attention. I wish I hadn’t let people tell me it was all in my head or that all parents worry. Once he was closer to a year, I found this list of early warning signs very informative. Although many people around me thought it unlikely that he had autism, as he grew older and experienced his first regression, it was harder to deny, and his diagnosis came as a relief. I’ve asked other parents of special needs children what they wished they had known in those early years and the two most common phrases I hear are “trust your instincts” and “don’t wait”. Some people in evidence-based groups are distrustful of parental instinct because it has led to a complete rejection of modern medicine, but as long as a parent is following evidence-based practices, parental instinct should be respected.

I remember vividly a thread I started on my concerns with Corwin and a mother, who knew me well and had concerns about her own son, broke free from the regular refrain of “don’t worry” and said, “I trust your judgment. If you believe something is wrong with your son, then something is.” I’m so thankful that she didn’t dismiss me. I am so glad that I had a few people in my life who helped me push for my son.

“Have you tried these various techniques designed to encourage speech/eye contact/crawling?” In her AMA on reddit, Temple Grandin said that the worst thing you could do for an autistic child is nothing. Even for a neurotypical child, waiting is the last course of action that should be suggested. There are plenty of techniques available for free on the internet that can help a parent teach a child to speak, learn to crawl, learn to drink from a cup, or any other milestone. With my neurotypical son, we didn’t just wait and see, but we started a mild form of speech therapy that was easy to do at home and prompted language. For children in the gray areas of the ASQ, the proper response should not be “wait and see”, but “guide and monitor”. The ASQ contains information on suggested games and activities to help children in their development and many pediatricians have further guidelines and suggestions that can help.

Penn State has a free online program designed to help parents of young children with autism, cerebral palsy, Down syndrome, and other disabilities learn to communicate, but can also help neurotypical children as well. It’s designed for children from infancy to preschool age. It’s very basic and easy to understand.

The Hanen Centre has some helpful tips and information on speech development as well as suggestions for fun activities. I’ve heard wonderful things about their books from various Speech Language Professionals. More Than Words [affiliate link] is the one consistently recommended to me but, because of the expense and since both boys’ language improved so quickly, I haven’t had a chance to check it out myself.

When talking to your child, some recent studies have shown that responsive rather than directive interaction does more to help speech development, especially in autistic children. Responsive language is when you talk about what the child is currently doing. Directive is when you try to prompt the child into using language. By trying to enter into the child’s world and follow their lead, you are much more likely to positively received by the child, which encourages more interaction overall.

An Early Start for Your Child with Autism [affiliate link] teaches families how to do the Early Start Denver Model at home. The ESDM is a form of therapy designed for children under the age of 3 that was developed out of the UC Davis MIND Institute. Although it was built for the under 3 crowd, it can be used up until 5. Some the principals, like how to do ABA therapy, are good for children of all ages, but most of the book is centered around the under 5 age range. It’s also a great book for how to evaluate and find the various services that autistic children need. I gave a copy to all of my siblings with children because I found it so helpful for both my sons. In this series, I wrote about how I set up a play area based on the guidelines suggested in this book and how much it increased communication and prosocial engagement for both of my boys. I’ve noticed that most of the clinics we visit has a similar set up.

For additional info and resources beyond speech, please see this post: What can I do now at home to help prevent or treat developmental delays?

Don’t dismiss all parents as needlessly worrying and tell them to wait. Like Einstein, Temple Grandin didn’t speak until she was 4, but early and strong intervention methods are responsible for the success she has today. Reassurances do have their place and can be helpful, but temper them with information.

Trackbacks

  1. […] Several reasons, chief among them is that, as I wrote about earlier, many parents often have their concerns dismissed. On top of that, early signs of autism are missed, even by experts, in the short period of a […]

  2. […] months. Why the long wait? Several reasons, chief among them is that many parents often have their concerns dismissed. On top of that, early signs of autism are missed, even by experts, in the short period of a […]

Speak Your Mind

*