When family members are in denial

Do you ever get into disagreements with someone trying to convince them of something? It could be a trivial thing like the best brand of laundry detergent to buy or a heated discussion about the best candidate to vote for.

Do you find it frustrating when you can’t get the other person to see your point of view?

Now let’s say you have confirming documentation from experts to back up your stance – would you be even more upset?

What if it had to do with your child’s autism diagnosis?

What if despite the analysis, the testing, the evaluations etc from qualified authorities in the medical community, your family and friends were still in denial about your child’s condition?

A common lament I get from the parents of children with special needs I coach and consult with is, “My _________ (fill in the blank) says there is nothing wrong with my child.” Comments such as these and the lack of support these parents get from disbelieving family members can be extremely irritating and disheartening.

Just last week a parent shared this with me.

“My own mother denies that her grandson has autism, she insists there’s nothing wrong with him. She sees him build something with Lego’s or interact with his sister and claims he CAN’T have an autism spectrum disorder. She tells me he doesn’t need a special ed preschool I enrolled him in or the speech therapy because he can talk. Some days ‘I’ find it hard enough to accept my son’s diagnoses. All I want is support. I don’t want to feel like I’m in a courtroom defending and pleading my case.”

Once a child is diagnosed with ASD, parents are unexpectedly caught up in an emotional whirlwind full of disappointment, denial, anger and grief as well as trying to identify how best to approach their child’s treatment. In their struggle with their own denial, many don’t notice right away but eventually realize that some of their closest family members are not on the same page. Everyone’s path to acceptance is different, some just take longer.

So what do parents do when the people they need the most are not in agreement about their child’s diagnosis?

Tips:

• Remove the label – We often seek labels yet curse them at times. Take the focus off the label and shift to the things your son CAN do! Ask yourself if the label is really crucial when interacting with your family members? If not – stop using it. Talk about what your son’s brain needs to make the best connections… what your daughter needs to blossom, be successful and reach her potential (calm, no anxiety, no sensory overload, etc) Say something like:

“She responds so much better if you…” or,

“Yes he needs everything the same every time, just like you need …!” or,

“Every kid has their quirks and these are hers.”

•  Agree to disagree – The autism diagnosis, treatment discussion or school placement conversation, might just have to start and end with, “We all love Ryan. So let’s just agree to disagree.”  And don’t discuss it any further. Then stay true to your word and be a good role model.

• Gain perspective to guide your reaction – Please understand that when your grandmother was actively parenting, autism was probably a more devastating diagnosis. Until just a few decades ago, the word autism painted a picture of a child who could not speak or interact appropriately at all. The word retarded was mentioned or an image of a child rocking back and forth and banging his head against the wall repeatedly came to mind. This may be your grandmother’s perception of what autism is like, and her grandchild’s behavior doesn’t exactly match. If this is the case, focus on the next tip.

• Provide information – Realize that people are often uncomfortable about things they don’t understand so take the time to educate them about your child’s unique way of relating to the world. Give your friends pertinent information and let them know how they can be helpful to ease the awkwardness. Encourage them to ask any questions and be open to responding to all of them if. Try to focus less on your child’s limitations and more on your child’s unique abilities, normalizing their strengths and weaknesses.

• Be assertive – respectfully yet clearly state what you need to be your best as a parent. If your mother-in-law explains her more distant attitude since the diagnosis as, “you need some time to yourself” and/or “I don’t want to intrude at a time like this”. Respond with a ‘yes … and’ comment. “Yes, having some time to ourselves is good and having you share time with Johnny and I would be really helpful as well.” Or if your mom is around but making statements that don’t support you or your child’s autism you can say, “If you don’t feel you can support me in this…. please don’t comment or judge … it is not helpful!”

• Be realistic – This diagnosis will force your family system to function on a different level, which in turn will affect your social circle. Out of necessity, your life may begin to run in opposite directions from the people you know and your time may have to be allocated differently. Doctor’s visits and treatment programs may begin to eat up a lot of your free time that you once used to socialize. Even though you still need the support of your friends and family you will want to associate with parents who have “been there and done that” by joining support groups for parents of autistic children.

• Ask – If you sense your friends and acquaintances are beginning to distance themselves from you, be up front and clarify the situation before making assumptions. Use direct, yet kind, words and make sure you share your feelings with them. Ask them for an honest response so you can begin to resolve any issues that may be brewing under the surface. Addressing misconceptions early on will allow you to build a supportive relationship before it is too late.

Because people often fear what they don’t understand, especially when others experience the world very differently from them, understanding is crucial but takes time. As with many social dilemmas and awkward situations, awareness and education can go a long way in making it easier for us to reach out to each other. So be patient while staying committed to meeting your child’s needs in the best way possible. Family members and friends will eventually see the results of your efforts and come to realize the truth.