Do you ever get into disagreements with someone trying to convince them of something?
It could be something trivial like the best brand of laundry detergent to buy or a heated political discussion about the best candidate to vote for.
Now let’s say you have confirming documentation from experts to back up your stance – would you be even more upset?
What if despite the analysis, the testing, the evaluations etc from qualified authorities, your family and friends deny your child’s autism diagnosis?
Common laments I hear from parents are:
“My mother says there is nothing wrong with my child.”
“My sister sees him build something with Lego’s or interact with his sister and claims he CAN’T have an autism spectrum disorder”.
“My neighbor tells me my daughter doesn’t need the special preschool I enrolled her in or the speech therapy because she can talk.”
Comments such as these and the lack of support these parents get from disbelieving family members can be extremely irritating and disheartening. Most parents find it hard enough to accept their child’s diagnosis - all they want is support. They don't want to feel like they’re in a courtroom defending and pleading their case.
Once a child is diagnosed, 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 diagnosis. Many don’t notice at first but eventually they realize that some of their closest family members are not on the same page. Everyone’s path to acceptance is different and some just take longer.
So what do parents do when the people they need the most are not on the same page?
- 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’s sensory system needs to calm down..., what will help your child be more successful in reaching her potential.
Say something like:
"She responds so much better if you..." or,
"Yes he needs everything the same every time, just like you need …!" or,
"Everybody 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 and want the best for him. 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: 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. Try to focus less on your child's limitations and more on your child's unique abilities, normalizing his 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 yourselves. 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 Lily 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 just adds to our anxiety!”
- 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 socialize with 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 be with family and friends. 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 more supportive relationship.
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.