How Do You Respond When You Suspect a Loved One Is On the Spectrum?
Hi, I wonder if you can offer advice on how to deal with an adult son who, although undiagnosed, I am sure is on the spectrum. He does not do small talk, doesn’t understand why anyone should be interested in what he is doing, and has no interest in anyone else. Conversations are very difficult. If I message and he responds, it’s with a one-word answer. I have no idea whether he wants to have a relationship with me. As a mother, I don’t quite know how I should be?—Susan
Answer: When you are aware of autism, you start to notice signs of it that escape others. The screaming child in the grocery store seems overwhelmed to you, but to others, he may just seem poorly behaved. Your friend’s child who always seems to be playing alone and is bullied raises red flags. You view the teenager next door who rarely responds to your friendly hello with curiosity rather than irritation.
Closer to home, you may be nagged by questions about your own teen. Showing no inclination to spend time with peers or prepare for his future, you wonder if born earlier, he might also have been diagnosed on the spectrum like his little brother. But in those days, autism wasn’t on your radar.
Or perhaps your teen did get a diagnosis, and as the years go by, you more and more notice similar traits and behaviors in others in your extended family. Perhaps you view past incidents with a parent or a sibling in a new light. Or perhaps you have a grandchild, niece, or nephew who is floundering, but whose parents have never seemed concerned or inclined to take action.
You might even look back over your marriage and see patterns that start to make sense if viewed through the lens of autism. Interactions you attributed solely to your partner’s “quirks” take on new meaning. Could it be that you have both a child and a spouse on the spectrum?
What to do with these questions? It’s a difficult position—you want to help, but you don’t want to intrude or alienate anyone. Yet my experience has been that when approached with sensitivity and preparation, voicing your concerns usually leads to positive results.
Here are the approaches I’ve found most helpful.
1. First, give some thought to who the person you want to broach this with would be most receptive to. It may not be you. Try not to take that personally— it usually simply means your relationship is a close one and thus your words “weigh more” and can raise defenses more quickly. Often a beloved relative or friend, if well informed, can be an excellent alternate choice. A trusted, knowledgeable professional, a religious leader, teacher, therapist, or coach can also be a good choice.
2. Timing counts. Never spring this conversation on someone when the person is upset. Likewise, never, ever bring up the possibility of being on the spectrum out of your own frustration. Get grounded in a loving, supportive space and choose a private time and place.
There is no immediate rush; better to go slowly, than proceed rashly and end up with your loved one shut down to future conversations. (And typically there will be numerous times you bring this up— it’s not a one-time conversation; it’s more like a delicate chipping away at fears and misperceptions).
3. Prepare and be informed. Go online and review screening questionnaires for autism. If you are delegating the conversation to someone else, do this together, so he/she really grasps the specific reasons (the traits and behaviors) that have concerned you. If you’re not sure the person “gets it,” either slow down and have more conversations or find someone else to help. While you can’t expect the approach to go off without any glitches, he/she really needs to have accurate information.
4. Put yourself in the other person’s shoes. None of us like the feeling of being told what we should do, or how we should be. And this is what this conversation can feel like, no matter how supportive we try to be.
Approach the discussion from the perspective of the other person’s needs, not yours. Are there questions you have reason to believe he/she may already have about themselves? Does the person recognize specific things that are difficult for them? Or does he/she ever complain about how others are different, or even “stupid?”
5. Piggyback on any of these concerns the person (or their parent) may have. Bringing up something they’ve never considered is not as useful as discussing something they’ve already noticed. Start with curiosity and questions, not advice or answers. “I’ve been wondering about something and am curious about your thoughts.” “I’ve noticed you mentioned _____ a couple of times and was thinking maybe you’re on to something. What do you make of it?”
If the person seems open, give concrete examples of behavior consistent with autism that you’ve noticed. But always offer this in an “I wonder” format, never as evidence or proof of autism.
Mental health professionals know that even with training and expertise, diagnosing autism can be tricky. Behaviors and traits that look autistic can actually come from many causes.
Just wonder aloud, and then listen carefully and fully to the other person. Let him/her vent or disagree.
Keep listening respectfully and perhaps gently ask the person to tell you more.
6. Follow up with a small amount of information. People cannot process too much new or threatening information at once. Remember this is a conversation that will develop over time.
Do have some specific information and resources available but again, keep it limited unless the person asks for more. It can be helpful to leave a one-page screening questionnaire (that you’ve reviewed to be sure it is age and severity level appropriate) with the person for later review. For a parent, it can be useful to give them one or two web links—again specific for their child.
Ask if the person wants more information and then offer to help find it.
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7. Always emphasize the positive. Point out strengths and wonderful qualities of the person. If those characteristics are common on the spectrum, point that out too. If you Google “autism strengths” and use the “images” filter, you’ll find many wonderful lists, diagrams, and quotes. Consider printing one out that seems to apply best to the person you’re talking to, and have it handy in case it seems appropriate to give it to him/her.
8. Go with the flow. Reactions vary widely and you’ll need to adjust accordingly. Be prepared to back off and acknowledge that your concern may be unfounded if necessary.
Reassure the person that your intent is to be supportive, not judgmental or interfering. But do this indirectly. Saying “I’m just trying to be supportive” can sound inauthentic or like a martyr. Instead try saying, “I’m nervous even bringing this up, but I know how much you want the best for Tommy and I love you both.”
9. Sometimes written communication works as well or better than verbal. The person can go back to it repeatedly and digest it over time. Keep it simple though. You can follow up later.
10. Don’t be attached to the outcome. Instead, focus on keeping the process positive. Remember—you are simply planting seeds of curiosity.
Be prepared to walk away with a feeling of incompleteness. That’s okay. Unless there was outright denial and anger from the person (which I’ve found is unlikely if you follow these suggestions), you can return to the conversation later. In fact, even if there is initial strong resistance, if this is your child or spouse I suggest letting a month or so pass then revisiting the topic. You might try having a different person broach the conversation the second time around.
Also remember that even if the person didn’t seem to be receptive, he/she might have had a very different inner experience than he/she showed. Pride, fear and embarrassment can prevent a person from letting you know how much the conversation meant. You may not see it now, but your opening up the discussion may have been a relief and the beginning of a new chapter in a person’s life.
Most importantly, keep being there for your friend, no matter what his/her response was. When and if he/she is ready to talk more, your friend will know you can be counted on for nonjudgmental support and caring.
This is article was featured in Issue 78 – Back to School Success