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Spreading Awareness, Reducing Stigma

If you are a family member or caregiver of someone with behavior challenges (tantrums, hyperactive, not listening) or special needs, you may have experienced the emotional effects of the stigma placed on the behaviors or the disorder. Maybe your child screamed, flapped their hands, make noises or have an escalated tantrum, and you have received the disapproving stares of annoyance, discomfort or confusion. It is important to remember that although this may feel embarrassing or upsetting, these behaviors are likely a common presence of your child’s disorder and any shame surrounding them is due to cultural stigma or unawareness.

A recent story of a mom and her sons who experienced public shaming has provided inspiration to advocate for families like hers. This mother’s children have Autism Spectrum Disorder and were stimming (flapping hands, rocking, jumping, humming), while at a gas station. Another woman and her children were laughing and making rude comments. One of the boys being mocked stood up for himself and his brother by saying, “Just because we’re different doesn’t mean we’re retarded. We have Autism. Ask don’t laugh.”

This act of bravery is something that should continue to be encouraged to reduce the unnecessary shame felt by families affected by disorders. By spreading awareness of presentations of disorders and behavior challenges (stimming, scripting, obsessive compulsions, hyperactivity, and more), our culture can begin to accept these behaviors and reframe how they are viewed.

TIPS: DEALING WITH STIGMA SURROUNDING YOUR CHILD’S BEHAVIORS

  • Before you go into a situation, prime your child. For example: explain what you will do (e.g., “We are going to the mall, and visit 2 shops”), what the rules are (e.g., “Stay next to me, keep hands by yourself”) and possibly a reward. This will help to prepare a situation.
  • Keep your focus on your child. Remember that their behaviors are part of their disorder or their behavior and it is not necessary to feel shameful for that. Tell yourself, that the calmer you are, the more your child will sense that and the situation will be handled better.
  • Address your child’s need. Their behavior could be their way of asking for help or letting you know they are overstimulated. If your child has Autism Spectrum Disorder or a Sensory Disorder and stims, try to find an appropriate replacement behavior that will provide sensory feedback to your child. For example, some children respond to pressure with a calming response. Try squeezing their hands or gently pushing down on their shoulders.
  • If necessary, try to remove your child from the situation if it’s becoming too overstimulating for them. Often, a calming break for several minutes will help to relieve the stress of the situation.
  • If the behavior is escalating, tell surrounding people to please give you space. For example, “My child has [say the diagnoses, or the challenges….], please give him us some space, he becomes overwhelmed when surrounded by people.”
  • Make a small card (like a business card), and hand it to people if they are staring in certain circumstances. This way, they are quickly informed (e.g., My child has….. He needs…) and they will often look away.
  • Stay calm. Your child responds to how you are addressing the situation as a cue for what is expected, so by staying calm and composed, you are giving a nonverbal reminder of what “calm” is expected to look like.
  • Provide positive feedback to your child when they are beginning to calm down. This helps them understand that they are beginning to engage in appropriate behavior and encourages them to continue to do so.
  • Use curiosity as a teaching moment. Sometimes children observe behaviors with a curiosity because they haven’t seen these behaviors before. Giving them a brief explanation such as, “he rocks his body sometimes to calm himself down,” is a good way to normalize the situation and teach children about accepting differences in others.

For some families, it is beneficial to integrate practicing public outings into your child’s behavior plan. With more practice, they will be better equipped to calm themselves in stressful situations or have an understanding of ways to handle stress.

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