What to Do When Your Loved One Won’t Accept the Autism DiagnosisA. Stout
If you are autistic or have an autistic child, you may have encountered someone who has doubted the diagnosis (“You don’t look autistic” or “You seem so normal” are two commonly heard phrases). While kind of annoying, we can generally brush off comments like this.
But what happens if it’s a loved one who is doubting the diagnosis?
Whether it’s your mom or dad, brother or sister, grandma or grandpa, or even your own friend or romantic partner, it can be frustrating and hurtful when a loved one denies a significant part of you or your child. Take comfort, however, in knowing that you are far from alone; many parents and autistic people experience this, unfortunately. Question is, what can you do about it?
1. Determine Why They Reject the Diagnosis
Doing this can help you determine the next steps you might consider taking. It’s not a bad idea to ask your loved one about it directly, but you might also have to play detective and uncover it yourself. There are a number of reasons why a loved one may reject an autism diagnosis.
- Simple lack of knowledge about autism. Maybe your loved one denies the diagnosis because they don’t know much about autism to begin with. Many people believe myths or have a stereotyped or incomplete view of what it is, and they may not realize it presents itself differently in different people.
- Fear for you/your child. Maybe your loved one is afraid of what an autism diagnosis means for you or your child. They may be scared of the stigma attached to it and worry about the future. Maybe they’re scared of the fact that a “label” is now attached to you or your child.
- Fear for themselves. While we aren’t totally sure what exactly causes autism, we’re pretty certain that at least a part of it is genetic. As a result, your family member may see themselves in you or your child and fear that they also have autism.
- Guilt. This can be especially prevalent if it’s your parent or your child’s other parent. Your loved one may feel like they have “failed”—they did something to cause the autism, or they may resent the fact that there’s nothing they can do to step in and “fix” things.
- Seeing nothing “wrong.” This one is actually based on something positive. Maybe your loved one just sees your/your child’s autistic traits as “that’s just part of who they are, and there’s nothing wrong with that.” They may perceive an autism diagnosis as you trying to say that you/your child is “bad” or “broken,” when that’s not what it’s about at all!
In any case, the reason your loved one dismisses the diagnosis is probably due to a personal defense mechanism or lack of information. Perhaps both.
2. Based on the Reasoning, Gently Inform and Educate Them
Depending on the person who doubts the diagnosis, this may or may not be effective, but it’s at least worth a try. Address their fears and fill in any gaps in their knowledge with language in layman’s terms. Show them any documents you received upon getting the diagnosis. If you yourself don’t know what to say or how to respond, do some of your own research and share with them what you find. There’s plenty of information out there. Here’s one to get you started, one that we definitely recommend sharing!
And if that doesn’t work? Well, read on.
3. Let It Go
You have much more important things to do with your limited time and energy than try to convince someone who isn’t ready to listen to you. Yes, it’s hard, and yes, it hurts. But arguing about it with someone who is obstinate is not going to get you anywhere. There is actually a psychological phenomenon called the backfire effect—when people are presented with information that opposes their deeply-held beliefs, they will cling even more tightly to their beliefs. So instead, focus on what is important: getting the help you or your child needs.
4. Be Patient
Just because your loved one denies the diagnosis now doesn’t mean they always will. They may eventually come around.
But in the meantime…
5. Refer to Autistic Traits Without Mentioning Autism
Even if your loved one denies the diagnosis, they probably won’t deny that different people have different personalities, preferences, likes and dislikes, and situations in which they are most comfortable. So talk about those needs and autistic traits like they’re anything else. For example, “I feel most comfortable when it’s quiet” versus “I need quiet because of my autism” or “Hand-flapping is the way Johnny shows he’s happy; let him express himself” versus “Johnny’s stimming because he’s autistic.” As Chris Bonnello said over at Autistic Not Weird, “In certain cases it’s better to concentrate solely on helping them to understand the person, and leave the ‘autism battle’ for another day.”
6. Surround Yourself With People Who Do Get It
So maybe your loved one doesn’t get it at this point in time. But there are plenty of people who do, and they can offer you the extra support you need. Surround yourself with people like this, whether online or in person.
7. When It’s Your Child’s Other Parent…
This can be an especially tricky situation. It’s one thing to have friends and extended family deny the diagnosis; at least then you can say, “Disagree if you’d like, but this is my child and I am going to parent him/her as I see fit.” It’s a totally different story when it’s the child’s mom or dad—someone who typically has an equal say in the upbringing. However, if this is your situation, know that you are still far from alone. It may take some time and work to help them realize their child is truly autistic—and that’s okay!
Consider taking the other parent to the doctor that diagnosed your child and have them explain. Give them a quick rundown of autism and the symptoms you see in your child, as well as examples. You can also figure out your individual strengths and weaknesses as parents and adjust responsibilities accordingly (great general advice, too!). For example, if Mom is more likely to yell during a meltdown, have Dad primarily handle them while Mom takes care of the other kids.
And above all, care for your child as best you can—something you already do very well!