Have you ever known the pain and discomfort of feeling ostracized, as if you just landed on the island of misfit toys? Most people experience the feeling of being left out as a child but it isn’t very common for an adult to identify with this feeling, or is it? Often parents of young children diagnosed with an autism spectrum disorder suddenly find themselves socially isolated.
Immediately after receiving the diagnosis, parents are caught up in an emotional whirlwind of disappointment, denial, anger and grief as well as trying to identify how best to approach their child’s treatment. Many don’t notice at first, but looking back they find evidence of a gradual distancing and suddenly realize it’s cold and lonely!
Where did my friends go? Parents begin to question what is wrong with them, wondering what they did to fall into disfavor. “I’m a good neighbor.” “I remembered her birthday.” They eventually recognize they are ignored, ostracized, or excluded by friends and acquaintances they use to have and feel as if they don’t fit in anymore.
Too many parents find their circle of friends and acquaintances dwindled once their child was diagnosed and the ones they had left were finding excuses why little Johnny or Susie could not attend their child’s birthday party. Yes, social systems are prone to shift naturally over time, but changes as abrupt as these are more complicated then that.
Are some parents of neuro-typical children uneasy about allowing their children to associate with others on the autism spectrum? Do some parents think that an autistic child is less fun to play with and perhaps a bad influence on their child? Regardless of these possible theories, is the gradual social exclusion these parents experience a case of conscious rejection or is it unintentional?
From the other perspective one has to ask if the parents of autistic children are simply trapped on a merry-go-round that begins to run in opposite directions from the friends they have? Out of necessity, do doctor’s visits and treatment programs begin to eat up a lot of their free time that they once used to socialize?
Whatever the cause, the fact remains that many of these parents experience collapses in their social relationships. Despite the reason, with the alarming statistics of 1 in 110 children being diagnosed with an ASD, autism affects a lot of families and many of these parents can’t afford to lose their supportive friendship ties.
It’s during difficult times like these that parents need support and understanding more than ever. Whether this is a simple shift in common interests and activities or a fear of what is not understood and uncomfortable, it’s important to address the problem.
How to be Supportive of Parents of Children with Autism Spectrum Disorder
Think beyond a playmate for your child – You may be correct in thinking that your friend’s child with the autism spectrum disorder doesn’t engage in play the same way your child does but their parent needs you more than ever. If you received a diagnosis of autism for your child wouldn’t support from your friends and neighbors be more crucial then ever? It’s not about the kids or another playmate for your child but a kind word and a supportive gesture to help them feel supported. These parents need you more than ever.
Empathize – Beyond sympathizing with the plight of your friend who has just found out their child has been diagnosed with autism and counting your blessings, try to stretch yourself further than that. If you can push yourself somewhat to acquire an accurate sense of what their experience is really like for them, do so. The ability to truly empathize will go far in helping you continue to reach out and support them in a way that is genuinely beneficial to them.
Reflect on your true feelings – Examine your mindset and attitude about autism honestly and see what you find. It is so easy to slip into the trap of putting people into groups and generalizing about behaviors. If you find yourself assigning negative characteristics to autistic children take some time to sincerely address it and find a way to get beyond it. Educating yourself about autism will help dispel any myths, misconceptions or fear of the unknown.
Don’t jump to conclusions – If your friend has recently received an Autism Spectrum Disorder diagnosis for their child and you haven’t seen much of them, they are most likely experiencing a whirlwind of emotions and dealing with a mountain of choices. Don’t assume that you have been dropped from their dance card; they may simply be overwhelmed at the moment so don’t take it personally.
Pay attention to your language – Be careful about your choice of words when talking to parents of autistic children. Terms or labels such as odd, disabled or even special may cause parents to become upset and defensive. If you are unclear or uncomfortable about what language to use, communicate your confusion and ask them what terms are best to use.
How to Encourage Understanding as a Parent of a Recently Diagnosed Child
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 possible. Try to focus less on your child’s limitations and more on your child’s unique abilities, normalizing their strengths and weaknesses.
Confront people – 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 communication and 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 salvage the relationship before it is too late.
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, you will want to associate with parents who have “been there and done that” by joining support groups for parents of autistic children. So pay attention to the possibility that your friends may actually be the ones who start to feel displaced first.
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 others. Unfortunately, we often fear what we don’t understand, especially when others experience the world very differently from us.
So, please take a moment and make a commitment to take one little step towards making the world a better place for all families regardless of abilities.
Parents of children with autism spectrum: are you finding yourself lost in a sea of confusion or feeling socially isolated? Explore this complimentary eCourse, “Parenting a Child with Autism: 3 Secrets to Thrive”.