Q&A Section- What should I know as a relative of an autistic child?
I am an extended family member of parents of an autistic child. We both live in the same metro area, but sadly we don’t relate. I have made numerous offers to have them visit my home, have had them with us on a couple weekend getaways, as well as traveling to their child’s milestone events so he would have kids (my kids) to help celebrate. I have offered to help them get him in the ocean, mountains, sleepovers, etc. I have also made, what in retrospect are typical blunders, on our first encounter when observing violent behavior toward my own children and their other child. We were never prepared, and were just going on our experience with friend’s kids who were also on the spectrum.
I thought we had gotten past the fallout from that first outing where we blundered, had subsequent successful outings but they did not include the spouse of my relative. I believe the current rejecting of all things ‘me’ is related to that single parent, but it none the less blocks any connection for the rest of us, most sadly for the autistic child.
Having said all that, do you have any advice for us self-learning relatives in circumstances like this? The parents are often shouting ‘awareness’ but we don’t know what autism entails.
Thanks for caring enough to ask this question. I think that you have some very good points. People in the autism community want people to be knowledgeable and accepting of autism but perhaps we haven’t sat you all down and explained it all. This is in part because all autistics are people that are as unique as you and me. So the first thing you need to know is to not group all autistic people in a box. They are unique individuals just like any other person in the world but with a different neurology. With that in mind I will try to explain some things but please remember that not all of these may apply to your relative.
1. Always assume they are competent; even if they don’t speak. Treat them with the same respect and competency of any other person. They may not respond but they can hear you and they usually understand.
2. Learn about sensory issues and sensory processing. This is paramount in understanding many things. All people with autism have trouble processing the information that is taken in through the senses. When all this information gets processed incorrectly or is overloaded with information the central nervous system causes havoc. Think of a computer that gets sent too many tasks to do because the user keeps clicking and clicking and overloads the computer to the point that the computer no longer knows what to do so it stops working or shuts down. This “shut down” in people with autism is referred to as a meltdown. The Central Nervous System is important for many reasons and when not running smoothly can interfere with eating, speaking, and cause self-injurious behaviors (ie. head-banging, biting). I explain in my latest book Early Signs of Autism that people can be under stimulated or over stimulated in each sense (not just see, hear, taste, touch smell, but also vestibular and proprioceptive senses). If they are over stimulated like the sound is really loud or the lights are too bright or they are visually overstimulated then the person will need to be removed from the environment so they can calm down. In many cases, people with autism calm down by “stimming” or repeating a movement like flapping their hands or shaking their leg, flicking a pencil, etc. If they are under stimulated they will seek out the sensation that their body is craving to fulfill that need. For instance, my son bangs his head if he doesn’t get enough vestibular input and my daughter will chew on anything if her jaw doesn’t get enough vestibular stimulation. These behaviors can seem like a misbehaving child if one is not aware of the cause behind them.
Due to the fact that their CNS is wreaking havoc it puts them on high alert almost all the time which is why they seek comfort in things that they can control like maintaining the same routine.
3. Learn to not be offended. Many people I know are offended if little Johnny doesn’t eat grandma’s dinner – don’t be! This goes back to sensory issues. Most children with autism do NOT eat much because of the sensory assault that goes on when they do. Do not say things like “He will eat when he is hungry” or “What a picky kid.” Besides sensory issues, many times children with autism can have difficulty chewing. My daughter has mild hypotonia (low muscle tone and trouble gaining muscle) and her jaw gets very tired from chewing which makes her not want to chew anything. For the first five years of her life she only ate smooth things like stage one baby food, pudding, applesauce, and yogurt. Plus the temperature of all her food and drinks had to be room temperature. Also, do not be offended if little Johnny doesn’t want to attend a birthday party or go the beach – it may be too much for him to handle. Respect the fact that some things may not be enjoyable for him the way they are for you.
4. Do not pity him. The biggest challenge people with autism have is Neuro-Typicals (us) that don’t relate and don’t try to understand. You are a wonderful person for trying to understand and learn. I hope that if you reach out (and tell them or maybe send them a card if they aren’t confrontational) that you are trying to learn more about autism to better understand and respect their child that they give you a second chance.
5. Do not be sad that he is “missing out” and force him to join or participate. Ask him and explain what you are going to do in detail (they like to know what they are getting into to help them prepare) but don’t force them. If he wants to join he will. Many activities that we find so important – they don’t. Invite but don’t force.
6. Anxiety runs high. Often children with autism have anxiety. This can be in part because of the sensory issues and also because many have differences in memory function. They might recall the time they went to the beach and a crab bit them so now they never want to go the beach again. What happened once can happen again. Don’t belittle a situation or a feeling that someone might have. Validate that what happened was scary and encourage them to try again perhaps mentioning the many positives that can take its place.
7. Figurative language is as clear as speaking in Chinese. Autistic children tend to take every word that you say literally so be careful how you speak. Although, many people can be taught the meaning of metaphors, it takes time to learn all those ‘hidden meanings.’
8. Some people with autism have delayed processing so if you tell them to do something or stop doing something you might need to wait a minute or two for your request to be understood. This is hard for many Neurotypical people to grasp and I often see people repeating themselves while the child is about to follow through. This also happens with speech. It takes my son a very long time to verbally respond. Not because he doesn’t understand but because speaking is very difficult for him. Try to tell them ahead of time. For instance, say, “In three minutes we are going to do X,Y,and Z,” to allow them extra time to process and prepare. Instead of saying, “We are doing ___ now,” and expect an immediate compliant response.
9. Punishment doesn’t usually work. For many autistic children, rewards or highly motivating things work much better and keep things positive. A sticker chart or a seashell for each good behavior and when they have ten they get an ice cream cone or a small candy, I usually recommend something edible so the reward is gone quickly so they continue the good behavior towards their next reward. If you give them a toy car they can stop being motivated because now they have what they want and it isn’t going away like the consumable item.
10. Sleep is often an issue. Many have trouble falling asleep and staying asleep. Most autistics produce less of the sleep hormone melatonin that aids in sleep. Behaviors can be exacerbated by lack of sleep for some people. However I have spoken with some autistics that believe that don’t need as much sleep to function. Either way, a typical 8-10 hours of sleep every night is often not the case, which can leave the parents tired.
11. Social cues and social skills are often difficult to understand. So speaking sternly or frowning to show disapproval is often not effective if they haven’t learned those social behaviors and if they aren’t looking at your face.
12. Eye-contact is not important. Many autistic adults have told me that they can’t look at someone’s face or eyes and process what is being said or talk to them. They have to visually process your face and to have to process your words as well is too much. I recommend saying things like, “Please come here and stand by my side,” or “Can you stand in front of me at arm’s length when talking to me?” You can always ask them if they heard you, if you are worried that they aren’t listening but don’t ever tell them to look you in the eye. My daughter and my son both look at the floor or to the side of a person and will occasional look at the persons face to see if they are still talking or still listening. While I respect that much of society believes that someone isn’t listening unless a person is looking in their eyes, I think their needs to be a balance of respecting some people’s difficulty in being able to make long-term eye contact for the duration of a conversation.
13. They don’t always say the ‘right thing’ or what they intended to say so go easy on them. They usually don’t mean to offend and don’t always realize when they do. For some children on the spectrum they can come across as “know-it-alls” because they are so smart but often lack subtleties when presenting their facts.
14. They have trouble calming down once they are angry because of their inability to self-regulate so give them some space and time. Many will need a quiet place to help calm down. Some will repeat a physical movement to help their body calm down such as flapping their hands, or rocking. This repetitive movement is known as stimming and they should be allowed to do whatever helps calm them (as long as they aren’t injuring themselves or others.)
I hope that these explanations help you to better understand some common behaviors. However, please note that these are broad generalizing statements and some may apply to your relative where as others won’t. I hope your relatives realize that screaming awareness without providing you with information of what to be aware about or the opportunity to prove your awareness isn’t going to help anyone.