What to do about my 19-month-old grandson who doesn't talk or make eye contact?

Question

My 19-month-old grandson is my son's and daughter-in-law's first and only child. He lives with me as do his parents. I see my grandbaby everyday. He had a severe regression after his 12 month immunizations. Before the immunizations, he could say a few words, was very social, was very happy, always wanted to play.

Now at 19 months, he does not say anything, no words at all. He will babble once in awhile. And by once in a while I mean a couple of times a week maybe. He will not make eye contact and if I try to insist on it he gets very frustrated. He walks on his toes almost constantly. He does not respond to his name ever, or requests of any kind. He has a habit of severe hand flapping, he will stand and flap his hands like he's trying to fly. When he sits down to play with toys, he doesn't play with them. He takes them and puts them behind his back. Once all the toys are behind his back, he turns around and does it again in the opposite direction, puts all the toys behind his back. He does this with food also, tries to put it behind his back. He wrings his hands and also does that behind his back.

I am terribly concerned about autism, but my son and daughter-in-law have no fears whatsoever. They insist that there is absolutely nothing wrong. I've tried to talk to my son and daughter-in-law. They are in complete denial that there is any problem with their child. They usually don't get to see the pediatrician unless the baby's ill and well check ups and shot checkups they see a PA and a nurse and that's it.

I've taken care of hundreds of children. My own two for starters. My younger one being born with a brain malformation, needed years of speech and physical and occupational therapy. I was a special education teacher at several schools.

I am at my wit's end but have thought of contacting their pediatrician. He was also my children's doctor. I know he can't relay any medical information to me, but maybe this might be of help for him to start a conversation at the next appointment. I don't know what to do.

Answer 1

First off: I make no medical diagnosis here, and encourage the baby's parents to talk to their pediatrician about these concerns (if they share them). This answer aims to address the parenting concerns and more broadly the research around the topic of speech delays and regression, without specifically addressing one particular child. Most importantly, just because some of these symptoms may fit your child, that does not mean your child has any particular disorder; your pediatrician is the correct person to make that and any diagnosis.

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Speech regression is fairly common in autistic children. This study from the University of Michigan¹ notes that "20 to 40 percent of youngsters ... appear to develop communication skills, then regress". It goes on to note that the mean age of regression is 19 months:

The mean age of loss was 19 months. Although children with regression had less obvious autism symptoms before the loss, most of them already had begun to demonstrate subtle delays before the word loss.

They describe some of the other kinds of changes also:

Children who used words and then stopped talking showed a pattern of developing and losing non-verbal communication skills, including responding to their name, imitation, direct eye gazing, gestures, participation in social games and receptive language skills before speech. They went from having more of these skills before the loss than other children with ASD to having fewer of these non-verbal communication skills after the word loss.

However, one thing to note that's consistently shown in studies (including the UofM study, this study², etc.) is that the regression is nearly always accompanied by other symptoms that were present before the delay.

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As far as what you should do, that's a bit more complicated. It sounds like you've broached this with the child's parents and they don't agree. If that's the case, you may need to step back and let them make their own choices. Provide them with information, but don't cross the line of intervening - you risk destroying your relationship if you do. Do some research for yourself. Encourage them to talk to their pediatrician - even if the parents don't ask, the pediatrician should be screening for these kind of delays as part of the normal visits.

As a parent, I can say that I generally appreciate information when it's provided simply as information, but I don't tend to appreciate my parents or in-laws telling me what to do. When you've already crossed that particular line, it can be hard because any information will appear to be pushing them in the particular direction already pushed - but it's probably the only thing you can do, in any event, so just be careful about it.

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Finally, please understand that there is no relationship between the vaccinations and this change. This is a common misconception spread by well meaning people, and made easier to believe because of the coincidence in timing - but coincidence it is and nothing more. Given how frequent vaccinations occur during the first two years of life, any change could be connected to a vaccination. Scientists have repeatedly studied this particular connection and verified that it is not connected. From the earlier UofM study¹:

There is no evidence that regression in ASD is associated with the measles-mumps-rubella (MMR) vaccine. Most children receive the MMR vaccine between 15 and 18 months, which is around the same time that the losses occurred. But variations in when children received vaccinations were not related to variations in timing of regression, and children who received a vaccination before parents reported that they became concerned were just as likely to already have delays as children who received vaccinations after the onset of ASD.

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^{1: University Of Michigan. "Autism: Why Do Some Develop Then Regress?." ScienceDaily. ScienceDaily, 3 December 2004. www.sciencedaily.com/releases/2004/12/041203100809.htm}

^{2: J Autism Dev Disord. 2008 Nov;38(10):1827-36. doi: 10.1007/s10803-008-0571-9. Epub 2008 May 1}

Answer 2

I am terribly concerned about autism, but my son and daughter-in-law have no fears whatsoever. They insist that there is absolutely nothing wrong. I've tried to talk to my son and daughter-in-law. They are in complete denial that there is any problem with their child.

This is an interesting question on parenting adult children. One never really stops parenting their children; the frequency and dynamic just changes tremendously.

In your situation, I would start by gathering data. Start with milestones (you can find them easily, for example here.) Gather as much information as you can and write it down. You might learn some reassuring things, or you might gather evidence of impressive delays. Either way, you can't have a rational discussion without some factual information from a reliable source to show your son and DIL.

If you find evidence that he should be tested (and I think you will), please avoid presenting the possibility that any parenting action or decision may have been a contributing cause (e.g. if you think it happened after a vaccine, keep that to yourself; they may be highly disinclined to listen to any advice that implicates them in any way, or contradicts current scientific knowledge. If you think this is because they're first-time parents, keep this to yourself as well.) This part should be approached as "Only the facts, Ma'am."

Blame your concerns on yourself, don't dwell on their lack of concern. Ask them to ask their pediatrician for a formal evaluation to please put your mind at ease. Tell them you're losing sleep (or making yourself sick, or whatever is true) over this concern you have, and would feel so much better to be proven you're wrong by someone who takes care of thousands of children. Promise them that if this is done, you will be greatly indebted to them, and will drop the subject. If a formal evaluation (not just a screening) is done, and there's nothing amiss, then it really is time to drop it and focus on your grandchild's achievements, which is something every adult child wants of their parents.

I wish you the best of luck.

_{Reading through the various sections of this CDC page and the appropriate links should be very helpful. Developmental Monitoring and Screening}