There are many reasons that lead to such a late diagnosis for Nicholas, many circumstances that contributed to a delay in red flags. Our situation was complicated, we now realise, as it often is with high-functioning autism/Asperger's. One of the main contributors to the late diagnosis was my family.
My family means well. They had no ill intent in anything they did or said. I was a young, first time mother and they all had many more years of child raising experience making them more confident in the knowledge they held. All I had were the children of the several dozen women I had met on the birth board. And my gut.
**When both your parents smoke, your grandparents smoke, and just about all your aunts and uncles and their respective spouses smoke and seem to live long happy lives (isn't 45 "old" when you're 7?), it's easy to conclude that smoking is the normal thing to do and that any claims of increased risk of illness are obviously exaggerated.**
And that is exactly what happened.
In asking very detailed questions about myself, my sisters, my uncles, and various other family members, and demanding honest answers and not "it's how kids were," it has become very clear to me my family is plagued with neurological, developmental, and psychological disabilities in children. All of which have always been considered "normal, but." What is "normal, but" you ask? It is "normal, but lazy" and "normal, but picky" and "normal, but spoiled" and "normal, but shy" and "normal, but needs to work harder to get it" and, my personal favourite, "normal, but needs to try harder." The truth is that none of us are normal. None of us are typical. And if we were all children today we'd all have various diagnoses and therapies too. And not just me and my sisters but aunts and uncles on both sides as well. And when our parents had their families to compare behaviours to it was easy to hold on to the truths they felt they knew.
| Misleading Truth | Actual Truth |
|---|---|
| Some babies are lazy and will consistently reach milestones just a tiny bit late. There is nothing wrong with them, they just like having things done for them. As long as they eventually reach the milestones all is ok. | Milestones have age ranges because all babies are different and may reach them at slightly different times. However, consistently reaching all milestones on the late side of the curb can be a sign of a developmental delay or disorder. |
| Children prefer to play and be lazy. That is why they will not follow even the simplest of directions if it does not involve fun or playing regardless of how you raise them or punish them. They will pretend to not understand or lose track of time to get out of doing things. | Children with Autism often become hyper-focused on an activity and will not be aware of outside factors such as time or people talking. Being told to do something "in 5 minutes" can result in it not being done at all because they lose track of time. They also have trouble following multi-step directions. |
| Children will throw tantrums when they are tired or hungry. All other times they are being bad and seeking attention or trying get what they want. | An over stimulated child will also throw tantrums. This will be more often if the child has a sensory disorder. A room with too many sounds or smells can result in a meltdown. |
| Children would live off of hot dogs and mac and cheese if it were up to them. The'll make up all sorts of excuses to not eat other foods including that it smells bad, tastes bad, and not being hungry. You must force them to eat it to prove to them that they do like it and can eat it or they'll become picky eaters. | A child with a sensory disorder will perceive food in ways NTs won't. Smells and tastes are enhanced and can become uneatable. Any surrounding smells will alter the smell and taste of even preferred foods making boxed MacNCheese a favourite at home but disgusting at a restaurant. |
| You have to tell kids the same thing a million times because they are lazy and will pretend to forget instructions and act as if they did not know or understand that rules do not change. They are playing with you and you mustn't play along or they will always think you a fool. | Children (and adults) with Autism/Asperger's have a hard time generalising information. This means that telling them to put their plate in the sink at breakfast will not be translated to put their plate in the sink at dinner time too. Instead you must tell them to always but their plate in the sink after a meal. |
| Infants and toddlers daydream just like older kids and adults. The reason they don't respond to you calling them when they are daydreaming is because they are too into what they are thinking about and prefer to ignore you. | I don't know if infants and toddlers daydream but if you can't easily sir an infant or toddler from a daydream type of situation a visit to the doctor is in order. It can be a hearing issue or a sign of a neurological issue like Autism. |
| No one likes losing or not getting their way. Children have an especially hard time coping with it and will cry or throw a tantrum if they lose at a game or not get their way. | People with Autism/Asperger's have an especially hard time dealing with losing and not getting their way. Our world doesn't make sense to them so disappointment is confusing. |
| Children simply don't like not getting their way and even if you explain why, they will not be happy. A good spanking for throwing a tantrum will teach them things don't always go as planned. | People with Autism/Asperger's thrive on things like calendars and schedules and charts that tell them what is happening and what they are getting. Even when these things are in place, not getting to do something that was planned will lead to meltdown. See above. |
| Yes, even the youngest of children will laugh at you when you are being serious. You must punish them for doing so because they will continue to laugh at you and mock you. | Children with anxiety disorders will sometimes laugh when they are feeling anxiety such as being yelled at for doing something wrong. Autistic children can also laugh at inappropriate times. |
| If you give in to all their fears you will raise a child that will always be afraid of everything. You have to push them and force them to face their fears even if it means punishing them for not confronting their fears. | Children with anxiety disorders, especially the more severe ones, will often be afraid of simple things for complex reasons. Not wanting to get on a bus likely has nothing to do with the bus itself or the destination but with a fear of death or abandonment or some other far fetched connection their brains have grabbed. |
I call these "misleading" truths because I can see the logic in them. However, they are also flawed and do not accurately describe a typical child. But when all the children around you seem to behave in such a manner it is easy to see how these things came to be seen as truths about children in my family. And when I would bring up my concerns I was simply given one of these truths with the added "you did the same thing" or someone else did the same. And when I would point out that other children his exact same age were different I would get "all children are different" and "Nicholas always does things when he is ready."
But it wasn't that simple. It never was for any of us. Everyone had done the best they could with broken children as their standard and I was doing the same. And now I know. He's broken. I'm broken. We're all broken people people raising broken kids.
Yes, I too am broken. My mother has many times told me, when talking about Nicholas, that I did those things too. In reading about growing up with Asperger's and issues adults with Asperger's have I have, more often than I'd like to admit, found myself thinking, "That is exactly me!" And it is no secret around here that I, too, have a sensory issue. So here I am, all broken and never haven gotten any sort of help or intervention that didn't involve a shoe or electric cord, trying to help a broken child. It would be quite comical if it wasn't so frustrating and confusing.
For Nicholas, we've gotten help. He has his various diagnoses and different therapies and we're trying to get him to function better in hopes of a somewhat normal adulthood. The past is done, all the mistakes have been made. All we can do is try to do better with the knowledge we have.
For 2016 I hope for Nicholas to continue to make progress and hope that we can continue to help him on his journey. I hope to continue to learn new truths that will help him too. And, hopefully, we have helped begin the end of these misleading truths in our family.
No comments:
Post a Comment