Good morning, lovely people. Time for Part 2 of my hopefully helpful guide to stuff the Autistic, Disabled and Neurodiversity communities have discovered.
The first thing I’ll say is parenting kids isn’t easy, but parenting exceptional kids is really really challenging. It’s worth it, though, because with a good relationship and the right supports, your autistic child can be a lot of fun to be with. They might not hit all the milestones you had planned out, things might come slower, but when they happen they’ll be wonderful moments.
All autistic kids are different. It’s a spectrum condition, and that means that there are an infinite number of ways to be autistic. Some people struggle with things more than others, we have different aversions, different attractions. What works for me might not work for your child, or your friend’s child. The important thing is to try a few different things and find out what works for your unique child.
All of the suggestions I’m going to make are on how to incorporate techniques into everyday life. Don’t make it into a chore, though. Your kid needs time to be a kid, and while it’s tempting to try to improve everything at once, the recommended 40 hours of therapy a week is likely to result in tired, stressed kids who are more likely to have meltdowns. Your child needs time to recharge their batteries, and how they do that should be up to them.
I’ll start with things that are in the diagnostic criteria. The core autistic traits:
Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
It’s probably one of the first things you noticed when you started to suspect your child is autistic. As an adult autistic, I can tell you honestly, eye contact is not such a big deal. I have problems with sustained eye contact, it’s very uncomfortable. I can’t really describe the kind of pain it causes, there’s just nothing I’ve found that’s similar to that sort of discomfort. I have found that excusing myself for this puts people at ease and smooths over any communication problems. “I’m sorry if I don’t look right at you when you’re talking, I’m Autistic and eye contact sort-of hurts.” It’s that easy, and people are generally really cool about it.
Your kid might not be looking at you when you’re talking, but that doesn’t mean they’re not listening. If you need confirmation that they’ve heard you, you can always ask, do some follow-up questions to make sure they’ve understood (if it’s important), and let them communicate with you what they’ve heard.
Also, give them some time to respond, there might be a delay while they process what they’ve just heard, or they might take a little longer to formulate a response.
Back in Part 1, I mentioned that we have a bit of a blind spot when trying to learn social behaviours passively just by being immersed in them. The same applies with body language, unless it’s pointed out to us or we set out to learn it, these little codes go unnoticed. I’m extremely hesitant to suggest any kind of therapy for this, as the therapies I’m aware of are excessively intensive and often unpleasant for the child. My suggestion for this would be to occasionally make a game of it, perhaps when watching TV or having a conversation, point out body language and facial expressions. (“Look, Sally’s crying, she must be feeling sad!”). There are also some good kid’s books out there with emotions and facial expressions.
Failure to develop peer relationships appropriate to developmental level
This is just one of those things. Your child’s developmental level is going to be different socially from what it is intellectually, physically, emotionally, and this means that deciding who their “developmental peers” are is near impossible. As long as they’re safe, happy and accepted, this isn’t something to worry about. It’s much more important that they have friends they can trust than having friends who are the “right age”.
If they don’t seem to have any friends, don’t push them. They might not have found the right people yet, just give them time. Whatever you do, don’t push friends on them.
A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
I just find this one weird. I don’t really have an answer for it. In the adults I know, reluctance to share interests is the result of knowing that our “special interests” are not shared by the majority, and the way that we share them is not socially acceptable. Show an interest in your child’s interests, but don’t push them. Some autistic people will drop an interest in response to feeling harassed about it when they just wanted to quietly enjoy it on their own.
Lack of social or emotional reciprocity
This is another one of those not being aware of the social rules and expectations, or the body language that goes with them. As I mentioned in the nonverbal behaviours section above, occasional gentle pointing out of body language, and from Part 1, occasional reminders of social conventions will go a long way to helping your child understand what’s expected of them. Judy Endow has written some books and 1-a-day calendars for older adolescents, but for smaller children, just making them aware of the rules when they come up should suffice.
There’s no need to make a big deal about it, just be clear and specific about what the expectation is:
“We say please when we ask for something, because it’s good manners”
While I’m on the topic of explaining social rules and what’s acceptable and not acceptable, and I know it’s a bit of an uncomfortable topic… Your child needs to know how to navigate the world of touching and nudity. Kids play with their private parts, this is totally normal, they’re just exploring their bodies and there’s nothing wrong or dirty about it. It’s not sexual, it won’t cause any ill effects, they’re just figuring out how their bodies work. While it’s easy to get angry with them for doing this at an inopportune moment, you have to be really careful about the message you send when discouraging them.
“No! That’s dirty!” is likely to cause long-lasting feelings of shame. “We don’t touch our privates in company, they’re for our alone time” is a much healthier message. This is especially important since we autistic folk don’t always pick up on the unspoken exceptions to rules.
Similarly, explaining in an age-appropriate way that it’s not OK for other people to be touching private places will give your kids a vital weapon against the bad people in the world. You can update the rules as they get older.
Qualitative impairments in communication
As I’ve said in Part 1, everyone communicates. There are lots of different ways of communicating, and it might take a while to find one that works. This is perhaps the most important trait to work on. It’s not important to get your child speaking verbally, what’s really vitally important is giving them the tools to communicate anything they might want to say in a way that works for them.
The first step to a happy, healthy child is for them to be able to communicate their needs. It makes everyone’s life easier because once they can communicate their needs, it’s easier to get those needs met. When needs are being met, meltdowns are less frequent and dangerous behaviours become less of a problem.
I’ve previously linked to Emma’s Hope Book with regards to stereotyped language, where words might not always mean what they seem to mean. Here’s another good post from Musings of an Aspie describing the difficulties posed by echolalia (repeating), and scripting (using a pre-set response to get through an interaction).
Look out for signs of distress or frustration that might indicate that your child is engaging in echolalia or scripting, and check in with them, get them to confirm in another way what they want. Having a back-up form of communication is a good idea even if your child appears to be communicating well.
Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
This one’s another one not to worry about. The purpose of play is to produce an enjoyable experience for the person playing. Really, if you’re gently making them aware of the social rules they need to know about, there’s no reason to worry that they’re not playing the “right” way. If your child is playing make-believe but is stuck on one theme, it’s also nothing to worry about. Autistic kids have a longer attention span for ideas than neurotypical kids. They’ll move on to a new idea eventually, it just might take a while. If you’re really getting sick of whatever game it is, though, a new film can have some success in jogging them out of a rut and into a new idea. Be prepared for the same long cycle with the new topic, though.
Encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
This one’s actually not as bad as it sounds. If your child has a “special interest” (I like to call them “sparkle topics“), I can tell you that they get a great deal of happiness from their topic. It might not interest other people, but it’s very important to your child. My passion is for inventing useful things. I have so many ideas for things I could make, that’s my Sparkle Topic. I have my job now because my employer asked me about my interests in my interview and liked that I could get excited about something.
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms
I’m lumping these two together because they perform similar functions. It’s all about regulation. Back in Part 1, I explained how autistic people have a harder time making space for everything in their brains. Routines, rituals and stimming (repetitive motor mannerisms) serve the purpose of helping the brain process all of that information. Routines help the brain prepare for changes in activity, this reduces how hard your child has to work to move between tasks. Say for example your child has a ritual that they do before leaving the house. A big part of this, while it seems nonfunctional, is to prepare them for the outside world. Taking away the ritual might result in them having a harder time coping with the noise, brightness, crowds or disruption to their previous activity. Just roll with it. Planning for the extra five minutes it will take for them to complete their routine before leaving will make the whole process more relaxed for everyone. You won’t be late, and they won’t be stressed.
Stimming is a big one. It’s short for “self stimulatory behaviour”. Lots of people say that stimming is nonfunctional and should be discouraged. The majority of the Autistic community disagrees (not everyone, and not all the time). Stimming is usually harmless repetitive behaviour that serves the purpose of helping your child to regulate their brain through sensory input. Stimming can include hand-flapping, spinning, verbal stims such as making unusual noises, foot tapping, twirling an object between the fingers…
Stimming can sometimes be damaging, for example repeated licking, biting, hair pulling, scratching or head banging. Behaviours that can be harmful do need to be addressed. The best way to do this is to communicate with your child to find a replacement behaviour that is safe but still satisfies the child’s needs. Biting could be addressed with a chew necklace. Self injurious stimming is a harder one to work with. I’ve had moments of hair pulling and head banging, and can say most of the time these are engaged in when a child is frustrated or when their needs aren’t being met. Establishing communication and addressing other needs will go a long way towards helping your child away from their self-injurious stims. Self injurious stims may also indicate an existing pain or illness, for example head banging as a response to headaches.
If you’ve covered all of these bases and are still having no luck with solving the cause of your child’s self-injurious behaviour, I’d urge you not to try to dissuade them by using restraints or punishments. Try distraction and redirection. Restraint really should be an absolute last resort.
That’s a general overview of managing the basic core traits of autism. Part 3 will cover specific co-morbidities (conditions that are not autism but often co-occur with autism, such as SPD and APD).