Getting a diagnosis of autism for your child can come with a flood of various emotions, thoughts, and reactions. Every parent responds uniquely, and every child with a diagnosis of Autism Spectrum Disorder has their own individual set of sensory, social, communicative or behavioral tendencies. When my son was diagnosed, I struggled with the feeling that his diagnosis was extremely isolating for our family. I felt like no one else could possibly understand all of our challenges, and what we were going through. It was suddenly as if, whenever we left the house, people didn’t know how to react to us anymore. My son had very particular challenges in speaking, sensory overload, obsessive interests, and escaping tendencies. The more we went out early on in his diagnosis, the more I felt like the diagnosis was so much harder on our family, because it pointed out our differences, and people’s lack of awareness regarding autism. It felt like no one knew how to help. Thinking back now, I can understand that it isn’t that people wanted to isolate us, rather, it was more likely that our friends and family members didn’t know what to do to support us in our daily struggles. In order to help spread awareness and inspire more family members and friends of caregivers of children with special needs, I decided to make a list of some generally helpful tips on how to come alongside the family you care about, and really be helpful.
1. Think of Them While you are Running Errands.
This might seem simple to you, but shopping with a child with special needs can be extremely challenging and/or stressful. In addition, finding time to shop among a bunch of therapy visits can also be tricky. So, if you are already out shopping, why not grab them something from the grocery store that you have seen them use often? Maybe the parent or child has been seen with a favorite snack, or drink? Juice boxes, string cheeses, animal crackers? Make sure you have seen the child or parent enjoying the item before buying it, in case they are on dietary restricted guidelines.
2. Make the Environment Comfortable.
If they visit your house, it could be helpful to have your WIFI password written down or memorized to easily and quickly give it to the family, in case their child’s comfort, or communication style, come from their electronic device. Ask the caregiver, or the child if appropriate, if they would like the music or TV on or off, or at a lower volume, or if the lights are too bright for them. Offer them a comfortable alternative to the main socializing area, where they can take a break and regulate themselves when stimulation is feeling too intense. Another consideration here is safety. Generally speaking, it is best not to have freely accessible exit points for the child, in case the child has tendencies to escape, and could wind up on a dangerous road or nearby body of water.
3. Realize Social Cues may be Missed or Responded to in a way you Don’t Expect.
Don’t expect the child to, or be offended if the child doesn’t, say ‘hello’ or ‘goodbye.’ Some children don’t do greetings well. It doesn’t mean they are being rude, or that they won’t be able to connect with you later in a less pressured scenario. Some children don’t like singing or music, which may come into play at a birthday party, and you may see the child cover their ears, or leave the room where everyone is gathered to sing. Other children need a little extra personal space to rock, or flap their arms a bit when excited. Also, some children may want to repeat an activity for longer than planned or play with a toy alone or in a unique way. Give them some freedom with this, whenever possible.
4. Be Flexible With how you are Willing to Interact With the Child.
Communication comes in many different forms. Some children may react to silliness, some to talking about their favorite TV show character, some just by enjoying being next to you while you do the same activity without talking. Be open to trying something out of the box, and also be open to trying something else, if your first attempt doesn’t work as well as hoped. Try not to force the child into anything, but rather follow his/her body language as to whether they are wanting to interact at that moment or not. Children with autism need to feel love and acceptance for who they are, as much as any other child, even if it appears that the child doesn’t want you around in that moment.
5. Keep Your Reactions Calm and Non-Judgmental.
Keep in mind, that the child may be unexpectedly triggered by something you didn’t know would trigger them to have a strongly emotional reaction. It could be that a noise was too loud, or that sounds and people in the background were over stimulating. It could be that an item they were interested in was moved or taken. The best thing to do is stay calm and let the caregiver direct what will work best at that time to calm down the child.
Sometimes the ‘perfect storm’ can cause a full out meltdown. This is very difficult for both the child and the caregiver. What you see may shock you. The child may throw things, hit themselves or someone else, scream, or shove their body into a tight space such as under the table or behind the couch. Please don’t overreact. If you see this happening, you can offer to help in several ways. You can help move things away from the meltdown scene so the child doesn’t knock down or break things around them, or hurt themselves or someone else. Offer to hold something the caregiver is struggling to, like their wallet, keys, drink, plate of food, or bags, so that they can use both hands to help soothe the child. If the only helpful thing that can be done is removing yourself from the situation at that moment, don’t be insulted or hurt. Send them a message later on that day, encouraging the caregiver that you see how hard things are at times, but that you are in this relationship for the long haul, no matter how hard some situations may be.
The Bottom Line.
There is no perfect solution, because the spectrum is called that for a reason. Symptoms and intensities vary, from child to child with the diagnosis, and even within the same child in a single day. It could be based on what has been changed in their routine that day, a stressed out or dis-regulated sensory system, or a sickness, cold or ear infection could be starting up in their bodies. Sometimes, we don’t even know what is throwing them ‘off’ that day.
A great way to come alongside a family struggling with finding their ‘new normal’ after a diagnosis, is to extend love and grace to them. Please be patient, if they don’t answer your text or phone call for several days. Most likely, they appreciate your friendship greatly! Try sending them messages anyway, about how you are available to vent or have a get together, with or without the children. Try to show compassion, even if the only available time to meet up is cut shorter than hoped due to the hectic schedule of your friend running all over town to various therapies. If they have to cancel at the last minute, arrive late, or leave early, please understand they are probably doing the best they can, in their child’s best interest, while also trying to stay part of family and friend events and relationships. Sincere, loving friends and family members can make a world of difference in special needs family’s lives. They appreciate your love and support, and can always use a reminder that you are open to suggestions for what they consider would help them, and their child, to feel important, included, and treasured. Thank you for caring enough to ask and for being a partner in loving a special needs family.