We get asked this question all the time. We’re fairly vocal advocates for autism awareness and education in our community, and people stop us in the grocery store or on the street and ask this more regularly than you’d believe.
It’s usually a concerned sister, aunt, or friend who is noticing “unusual” behavior in their relative/friend’s child, and they want to make sure that the child gets the right intervention at the right time. Be warned, however, because denial will rear its ugly head. It will win out over logical thinking. It’s been my experience that we all spend some time there, but how long we linger is individual. The message will likely NOT be well received.
How do we tell them? Should we tell them?
The answer is: depends.
First, unless you are a person clinically certified to make a diagnosis, don’t. Period. I am a huge advocate of early intervention (EI), but any intervention at any age is better than none. A month or two probably won’t make all that much difference in the long run. Discovering that your child has a lifelong developmental disability is a game changer. The parent of that child will go through a grieving process for the life they had envisioned with/for that child.
Dr. Kubler-Ross describes the five stages of loss and grief as:
- Denial (Not MY kid!)
- Anger (How could this happen? It must be _____’s fault!)
- Bargaining (God, I’ll go to church four times a week from now on if you only make this better)
- Depression (Our lives are ruined!)
- Acceptance (Ok, we’re in this – what’s our next step?)
If you, concerned friend or relative, approach your best friend and TELL her that her son or daughter has autism, she’s likely not going to believe you. If you, the clinical pediatric psychologist, tell this lady that her son has autism, she may not initially believe you either. Keep this in mind.
She may become angry at your insinuation that something is “wrong” with her child. She may be angry in general, but this raw emotion will likely get aimed at you. You can’t very well get angry at autism (and we all try), but you can certainly get angry at the person who introduced you to it.
I would suggest taking a very careful, gentle approach. Avoid terms like “always” and “never.” “Your son never looks me in the eye when I’m speaking to him.” “Your daughter always throws a fit when she’s in the grocery store.” Avoid comparing this child to his/her siblings or your own kids. Use specifics, such as “I noticed Jacob flaps his hands when he’s anxious” or “I noticed Phil melts down when the schedule changes unexpectedly.” Highlight positive behavior whenever possible.
There are a number of treatable biomedical problems or sensory processing disorders that can be managed or even cured with the right tool, and none of them is autism. Autism is a spectrum disorder. It means that there are cases that range along the ENTIRE SPECTRUM from very mild to severe. The signs and symptoms of autism mimic those of a number of other things. Like I said above, never throw a label at a kid. His/her parents will probably not appreciate you for it, even if it ends up being true.
Personally, I would say that you could bring up the concerning behavior, and direct the parent/friend towards a specialist who may be able to help, and/or provide a definitive diagnosis.
These people are/may be:
- Occupational Therapist
- Speech Language Pathologist/Therapist
When Jake was beginning the path to his diagnosis, we were told by our primary doctor that because he’s a boy, he’ll develop slower than girls. Because his grandfather was a late talker, he might be too. Don’t worry, we were told. After ruling out several biomedical causes, we were first offered autism a diagnosis from a pediatric neurologist. We weren’t ready for it. She labelled us with PDD-NOS. We began speech and occupational therapies. Even through all of these services and the following months, I wasn’t ready for the possibility that Jake would really have autism. When the psychologist made the official determination, I was crushed. I had been so buried in denial throughout the entire ordeal, that I was stunned. When my mother had mentioned autism early on, in an apologetic tone, I wasn’t ready to hear it.
How did you discover your child’s disorder? How did you take it?
Concerned friends and relatives:
Have you ever broached the subject with your friends or relatives? How did you do it? How did it go?