I got to thinking today what it was like to grow up with undiagnosed autism, and honestly, if it would have made any difference at all if I had been diagnosed.
I remember the complete and total brain freeze I would have when my parents would yell at me. And the intense, overwhelming anger I felt afterwards! I remember the times I smiled when I was telling the truth, which would make it seem as if I were lying, and it made me so angry that they couldn't really believe me because I smiled when I said it (or insert other inappropriate affect here).
It got me thinking about how my parenting has been different before and after my son's diagnosis. Little things that I punished him for, that I now realize are not things he is doing on purpose, or even things that are (right now) under his control. Things that he has trouble with because he has autism, things that I have trouble dealing with because I have autism.
Both my diagnosis and my son's has made a life changing impact on my parenting. I am a lot more understanding and respectful of my and my son's limits since being diagnosed. Looking at all the information, the full picture, has helped me greatly because I can give myself a break, and I can give him a break too.
When it comes to parenting, we want our kids to grow up to behave well, and when they don't behave, we are stern with them and typically (not in all households, but I'm willing to bet the majority by far) use punishments from physical to withholding affection in time outs or the like.
I'm not really going to talk about the down sides of these forms of punishments, because there are so many other blogs who talk about it and express those concerns a lot better than I could, both from a secular and a Biblical worldview.
What I would like to say is this: autism is still a bit of a mystery to most of us. Obviously if our child isn't speaking and developing normally we notice earlier that something is wrong, and we get help for those kids a lot sooner. However, that level of outward functioning is no measure of a child's autistic abilities or disabilities (different abilities). Consider this post from Autism Discussion Page on Facebook:
"Differences vs. Disabilities!
In previous posts, regarding the controversy over the labels “high and low functioning” and “IQ and autism”, we explored that there are two main dimensions that have to be taken into consideration when talking about autism. There are two dimensions that interplay in how the person’s ability to function will play out: (1) autism symptoms (sensory processing issues, rigid inflexible thinking, processing differences, executive functioning problems, communication differences, social and emotional difficulties) and (2) Intellectual or cognitive impairment (limitations in being able to cognitively process information, understand, learn, and adapt to environmental demands). As discussed in previous posts, a person can be “higher functioning” intellectually, but still have severe symptoms of autism, as well as a person can be more impaired cognitively (lower functioning) with less severe autism traits (more flexible, less sensory issues, easier time socially connecting, etc.). The whole confusion over “low and high” functioning has been because of the misunderstanding of how these two dimensions overlap. Granted, yes these labels are misleading and only tend to devalue the person. However, having a good understanding of these two dimensions (autism traits and cognitive impairments) is needed to truly understand how to help the individual.
There have been a lot of discussions and arguments around if autism traits are a disability or simply differences (different abilities). I think for purposes of discussion here, let’s define “differences” as a different way of processing and adapting, and “disabilities” as limitations in being able to adapt. For example, there are both sensory differences in autism and sensory disabilities. Common sensory differences in autism are better acuity of sensory detail, heighten sensitivity to sensory stimulation, strong perception of sensory patterns, unbiased perception of sensory stimulation, and strong sensory memory. Granted, some differences (e.g. sensory sensitivity) can be a strength in one situation, but a deficit in another (sensory overload). Whereas there are strong sensory differences in autism, there are also sensory disabilities. Deficits or disabilities can occur if the person has strong fragmented or distorted sensory “integration” difficulties, which interferes with the person’s ability to integrate their senses effectively. This can greatly affect their ability to adapt to the world around them in any environment. When you cannot consistently integrate your senses effectively it greatly effects all other functioning. In autism, individuals almost always have sensory differences, but sensory integration disabilities (distorted, fragmented perceptions, integration problems) vary substantially in severity.
The same holds true for cognitive differences. People on the spectrum process information “differently.” They are often more concrete, factual, detailed thinkers, with strong associative and static memory. In these areas they are stronger than the global, more inferential, thinking patterns of neurotypical (NT) people. NT people tend to process from general to specific, and people on the spectrum tend to process from specific to general. People on the spectrum tend to be more factual and less biased in their thinking, then the more global, inferential thinking of NT people. NT thinking tends to be more abstract, whereas spectrum thinking tends to be more literal and concrete, neither good nor bad, just different.
However, there are some processing disabilities that affect autism in varying severities. People on the spectrum can have strong disabilities in rapidly processing dynamic, multiple information, simultaneously. They have difficulty processing information coming rapidly from multiple sources (or multiple senses) at one time. Once the information flow slows down and is given sequentially, the processing improves drastically. Also, people on the spectrum have varying degrees of weaknesses in the areas of “executive functions” which consists of the abilities to control attention, inhibit impulses, organize, plan, and monitor a course of action, and multi-task. These can be seen as a disability because they do greatly limit the person’s ability to adapt. These too can vary in severity among people on the spectrum.
We all have strengths and weaknesses, which come packaged a little differently. Unfortunately, since autism is a minority in society, their differences tend to be quickly labeled as deficits (disabilities), because they do not fit the general norm. Different often stands out as a deficit, or weakness. This is where, like for many minorities, society can severely limit people on the spectrum. We need to embrace the differences and foster their development; not interpret them as deficits. Since their differences can be strengths that we do not have, their value to society can be great. All we have to do is look at some of the major contributions people on the spectrum have made to art, science, and technology. The more we can learn from the way they view the world, the better our world can become. Their strong perceptual and detailed qualities can, and have, dramatically improved the quality of living for all of us.
So, in bridging the two cultures, since the mainstream culture is neurotypical, we need to help those on the spectrum accommodate and compensate for their disabilities (more sensory friendly modifications, changing the information flow for them, respecting their tendency to become overwhelmed in our environment, avoid strong social demands, etc.) and foster their valuable differences. By embracing everyone’s differences, can we all benefit better. We have to be open that these differences mean strengths, not weaknesses.
This series on “labels, diagnoses, and co-occurring disorders” can be found in the green book, “Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies.” "
So, basically, your child's outward symptoms don't always match up with their level of autism. So a child that seems "normal" may actually be full of inner turmoil and issues that look like laziness or other things, when it is all a part of their autism.
This is true for me, at least as an adult, I guess. I had so many people tell me "But you're so normal!" - as if that meant I couldn't possibly be autistic because they see my outward function as "normal". What you don't see are the many many inner struggles, the denial of which cause me a lot of frustration because people then aren't willing to understand that I just can't handle certain things because of my autism, whether that be high intensity social situations or conflict, or whatever.
Then I wonder what it must be like to be a child like that. I was a pretty advanced kid, reading before kindergarten, that kind of thing. But I was still ill-equipped for the social environment of school. That remained pretty much the same all the way through high school. You may say "but how would you have ever learned to socialize without being in school". Well, I would rather have not socialized at all, than to have been put through 13 years of absolute torture mixed with teasing mixed with bullying mixed with awkwardness of obsessions and whatnot. School does not = socialization, but that is another topic for another time.
What if a child seems very advanced for their age? They walk on schedule, talk on schedule, maybe even beyond the normal range. They start reading and learning early. Do we deny these kids their autism because they can read, walk and talk? These kids might be advanced in so many things that we use to measure children, but in their heads, they don't understand why they are being punished all the time. They might not listen immediately (because they might not have even heard you when immersed in an activity). They might not understand when you are kidding or when you are serious, so they might think you're playing when you aren't, or that you aren't playing when you are. And I promise you, punishing them for these little things has a huge effect on their own self esteem and behavior in the future. For example, if you punish them for listening whether they heard you or not, they learn that it doesn't matter if they listen, they are going to get punished anyway. Eventually, the child might just become completely passive and inward, or they might act out more because of the confusion or frustration from not understanding why they are constantly being punished for every single action.
If you punish an autistic child for having a meltdown in a crowd, or for being upset over playtime being over, or whatever, you are telling them that their overwhelming feelings are wrong, that they are broken, and that they don't have control over their feelings and that they are wrong.
If someone punished me because I would rather go to the local grocery store because the big one overwhelms me, I would be awfully confused. What you're telling me is that it doesn't matter what my feelings are, or what my limitations are, it only matters what you want me to do. Therefore, I must look to others for my self worth, I must take the opinion of others as a rule for my own life, to the detriment of my own health and happiness. It doesn't matter if I have a breakdown over noise, crowds, or bright lights, as long as I do what you expect of me. Other people's expectations have more weight than my own needs and feelings.
I know because I have felt all of these things at one or more points in my life. It has taken a lot for me to finally say "you know what? I can say no to this event or that trip because it is just too much for me, and I would rather disappoint them by saying no, than to make the next 2 days full of exhaustion and frustration because of one overwhelming thing".
Obviously, we don't just say no to things we don't like, and obviously we still have to teach our kids right from wrong. But when it comes to things that have no right or wrong, things that you could have some kind of flexibility about ("do you want to wear the green pajamas or the blue?), why do we stubbornly force our children to bend to our wishes, so much so that we imply that they are worthless, brainless, and too stupid to decide?
If my son says he doesn't want to go to the grocery store, I don't force him to go. If I do, I will pay from the mania of him tearing all over the store, or begging for things, or having a surly attitude, or whatever. It is much easier to just say "okay, I understand your need to avoid the sensory input" than it is to force him to deal with things beyond his level. That being said, it doesn't always work out that he can avoid going with me, so he does get practice dealing with the sensory input too. He has good days where he can deal better, and if the store is slow that helps too. There is a balance here. It isn't just about locking yourself in a box.
What if the child isn't diagnosed? What if the autism is unknown? As an adult who grew up undiagnosed, this is a major factor.
So you don't want to diagnose your kid. So, you don't think your kid is autistic. So, so WHAT?
This kind of thinking can and should also apply to all children, autistic or not, diagnosed or not.
You can still respect your children's limits. If you don't, they won't know to expect that from other people. If their no can't ever mean a safe no with you, their parent, then how will they tell their friends no to drugs, for example? So your child doesn't like the grocery store, or they go nuts in there. Some kids aren't able to say that this is beyond their limits, they just don't know to. Teaching kids to have limits and boundaries is a very healthy thing to do. Saying "you seem like you aren't comfortable in the grocery store, how about we have you stay with ___ today instead?" teaches them that they are safe with you and that you can understand their limits. If you have a child who is consistently having a meltdown over certain things, you need to examine what is really going on. If they always have a meltdown in crowds, then you have to understand that avoiding those situations is in the best interests of the child (within reason, and also allowing good days for practice).
Autistic people often latch on to a belief they have, and they have a hard time hearing anything to the contrary, because their belief is so strong. Instead of forcing something else on them, why not meet them where they're at first? They believe something is a certain way, so empathize with them! "I hear you, you feel ____ because ___ and you're so ___!" This derails the train long enough for them to refocus off their passionate belief in what they "know", so that you can tell them what the truth is, or whatever.
Basically, I'd really love seeing more parents respect their children. There is so much punishment going on. Think about it, do you do what someone else wants you to do if you are forced to? If you do, does it make you feel good?
I'm not saying let your kids run wild, obviously. I'm just saying that autistic or not all people deserve to be understood, and their limitations respected. So what if someone doesn't like crowds or loud movies or something. Respect their limits, whether its a child or an adult. Many adults are going to be undiagnosed because they were missed (as I was) or they don't know, or they don't want to be labeled or whatever. Many women also will be undiagnosed because of the misunderstanding of autism in females, and this has not changed that much over time (yet).
So, just respect other humans as you would want them to respect you. Child or adult, we all have our strengths and our weaknesses. Forcing a child into something or to do something just because you think you should, or you think they should, or you want to keep up a normal appearance in front of your friends or family is no service to your child.