While most families view social occasions as exciting and joyous, families with autism panic. There are a number of factors that can cause a boisterous celebration to go awry for those of us living with autism. The day the invitation comes in the mail, email or from a phone call, the panic begins.
Let’s talk about the event itself. Family gatherings may seem easy and non-threatening but it’s full of anxiety when not every family member is on board with your child’s diagnosis and treatment. There always seems to be one relative who thinks your child is not autistic. It’s a hard pill to swallow when a member of one’s own family thinks your child is fine, or just needs more discipline. I cannot count the times I have heard well-meaning relatives say things that are offensive and hurtful. I have heard everything from, “Nobody was autistic when I was in school” to “Are you sure this isn’t just a stage she’ll grow out of?”
It can be very disheartening when family members do not understand (or do not want to understand) your child’s diagnosis. Family attitudes play a huge role in whether or not one (or one’s family) attends family parties. Birthday parties can strike fear in the heart of autism moms. Children’s parties are often loud, crowded, clown and cake-fueled nightmares. Noise is over stimulating. Many children on the spectrum do not like to be touched. Add in food aversions and you have a recipe for a major meltdown. It’s the perfect storm!
Some of you may even dread going to church (or any religious gatherings). It is difficult to tell any child to sit still and be quiet. When children on the spectrum are asked to be still and silent, it often becomes a game of how long until my child cracks. Church can be loud, crowded, confusing and, sometimes, boring. Who among us hasn’t seen the occasional adult nodding off in church? Some churches offer child care or Sunday school. This can be tricky for parents of children with autism. From my own personal experiences, it can be downright frustrating. My youngest daughter is verbal, but she is still autistic. I always remind her church teachers that she is on the spectrum, and might act differently than her peers. I would like to tell you that everyone is understanding and cooperative. Unfortunately, I have had teachers tell me everything from “She’s not autistic, she can talk.” to “Okay, what do you want me to do?”
I have never expected volunteer teachers at church to know everything about autism. As a mother, I just want to make sure that others are aware that autism comes with its own bag of tricks. For example, my daughter doesn’t like loud noises, doesn’t like to be touched, and has been known to wander off. I had one really eye-opening church incident when I was potty training my daughter several years ago. I was asked to leave the service and go to the bathroom because my daughter needed help with her clothing and no one wanted to touch or help her. This might happen to any parent during those potty training years. The problem is, this situation caused my daughter to have a meltdown. Needless to say, church was over by the time I remedied the situation.
Parents of children with autism constantly worry about leaving their children alone with people that do not understand autism. I would be a wealthy woman if I had a dime for every time someone said “I don’t even notice her autism.” You may think it is a compliment, but it’s really not. If a person doesn’t notice her autism, what will happen when she “acts” autistic? Even though my daughters with autism are high functioning, they are and always will be autistic.
I have learned a few helpful tips over the years regarding social invitations. First of all, do not stress about being invited to a birthday party, family gathering or any other social event. If you can’t go to this party, there will always be more. Second, only you can decide if your child can handle the party. In other words, if you think it will be too overwhelming or too disruptive for your son or daughter, bow out. Do not be afraid to tell the host of the party that your child has autism and parties cause too much sensory overload. Tell family members that you would love to attend the next big family get together, but it might be too over stimulating for your child.
Do not be bullied into attending a party. Do not feel guilty. You are the best advocate for your children. You know what they can handle. You can always:
- Schedule a one-on-one play date with a friend before or after a birthday party.
- Have a small dinner party with a few family members.
If you have to attend a party (or if you want to go):
- Make sure to find a quiet space in advance for your child to go to if overwhelmed.
- Bring some sensory toys or fidgets with you.
- Make a definite departure time.
- Bring a pair of headphones to drown out noise.
- Read a few books about parties before you go.
- Make your own social story about parties.
Most important, never make your child feel ashamed for not wanting to go to a party. Parties are full of social interactions. That alone can be too overwhelming. If you prepare ahead of time, parties can be enjoyable. So party on!