Ask An Expert / Autism Spectrum Disorder

Relatives don’t believe my daughter’s diagnosis because she doesn’t always ‘act autistic.’ What can I do?

Educating them is important, but so is protecting her

Laura Kirmayer, PhD, MSW

Laura Kirmayer, PhD, MSW

My 12-year-old daughter has extremely high functioning autism and severe ADHD. Close family, outside of one of her aunts and her grandparents, have a very hard time even being around her. They think that she is just acting like a spoiled brat as "she doesn't act autistic" all the time; and always try the "tough love" approach with her which just causes her to go even further into a downward spiral. I have told them that this is the last thing they should do but then obviously I am too soft. I am to the point that I go out of my way to avoid spending time with them and feel like I need to keep her isolated from them as she is not welcome. She use to idolize all of them but now is afraid of them; which makes her reach her maximum sensory limit even faster. How can I help fix this?

I am so sorry to hear that you and your daughter are enduring this stress from your family. Judgment and blame are heavy weights to wear when you are already doing all you can to raise your daughter.

You are right to distance yourself from people who inflict emotional pain and stress on you and your daughter. You’re also modeling for your daughter that you shouldn’t hang out with people who are not being tolerant and nice, which is an important lesson. But ultimately, because these are family members, you are likely to continue seeing each other. With that in mind, it is imperative to help them understand your daughter’s behaviors and strengths and challenges.

However, it might be better if this information comes from someone other than you since they’ve made some (unfair) assumptions about your parenting. Providing them with links to online resources might be a great step. You may even be able to arrange some communication between your daughter’s treatment providers and those family members—maybe a conversation or a document stating what autism looks like and why it might at times seem inconsistent.

I do want to say that if your family members continue to respond to you and your daughter in this negative way then it places her at higher risk for low self-esteem, depression, and high-risk behaviors. You’ll want to protect her from this, which could very well mean following your instincts and avoiding these interactions.

It will also be important for you to be as transparent with your daughter as you can. Have open conversations with her acknowledging that the way a person was speaking to her was wrong and that you know it might have been painful. Your goal is to create an open line of communication so that your daughter knows she can come to you when she is being treated this way, whether it’s by people inside or outside of the family.