I get it. You hate labels. Labels belong on soup cans, not on people, right? There are good reasons to hate certain types of labels. But some labels are helpful to you and your family and to others trying to understand your child and accommodate them.
Labels can help you get the appropriate help, which can be very important. However, one of the most important reasons to have a child diagnosed is so you’ll know that a lot of their behavior is not motivated by ill-will or a desire to cause trouble, and often not even done by their choice but is involuntary.
Contrary to what your mother, neighbor, nurse, or doctor might tell you, these children aren’t having fun during those meltdowns or screaming rages. They aren’t trying to manipulate you or just having a temper tantrum because they feel like it.
Do they look happy?
Does this seem a voluntary path to a joy-filled life?
Or does it look like pain? Anxiety? Frustration?
Maybe the light is shining painfully in their oversensitive eyes, the high sound of the fluorescent lights literally hurts and they can’t tune it out, their clothes are “touching” them and feel like briars scratching on a sunburn, they cut the paper crooked despite trying over and over for an hour, or the dog won’t respond to their commands because they can’t understand how to modulate their voice to sound authoritative.
When someone finally gives you that wonderful/horrible/heartbreaking diagnosis, you’ll know empirically the reason for your child’s behavior, and that will help you understand them better, have more compassion for them, and be a touchstone as you help your child compensate for what’s agitating them and usually stop the behavior.
The light hurts? Cover the windows in their room with foil. Put suction-cup-held shades on car windows or have them coated. Sound hurts? Find noise-deadening headphones with large soft pads that are large enough to go around the ears without pushing on them to cut down on the noise. Replace noisy light fixtures with silent ones. Etc.
And so you can deal with it, identifying it as due to the learning disability/developmental difference and not something that the child is doing on purpose or out of a motivation to act badly or irritate you. Not to say it isn’t irritating or frustrating at times. (Lock yourself in the bathroom for a moment and take a few deep breaths. Have your husband give you a night off and spend it reading a book hidden in a quiet corner at Barnes and Noble. Somehow manage to get a break once in a while. I know it’s hard, but take care of YOU also!)
It’s really important to know that some of the behaviors that appears teenager, moody, or bratty are actually the child just having an autistic moment, as we call it at our house (fill in whatever your child’s learning/developmental difference is).
They could be stuck in an obsession, be unable to think outside the moment, etc. And seeing their behavior from the outside as a parent and not seeing their internal thought process, it is so easy to take things the wrong way and become frustrated with them. Often we assign them adult motivations, when there’s no motivation at all – just a reaction to something in their environment.
Understanding that their behavior isn’t voluntary and is so tied to the brain differences really helps you to not get angry, to not judge them, etc., so you can help them through the moment. There have been a few times that I really got upset with my daughter. Once I went so far – I was VERY stressed while doing hospice with Mom – after a LONG talk with my daughter trying to get her to do something that I was so frustrated that I told her I thought she was being a brat (not normally something I would do at ALL!).
Looking back a few months later when circumstances and I were calmer, I was able to see that I had totally missed that my daughter couldn’t relate to what I was asking, due to her autism. And that she hadn’t been being a brat at all, but just totally could not understand where I was coming from and lacked the empathy – due to autism – to understand that she should be doing something for her grandmother rather than what she personally wanted to do.
When I was able to step back and remind myself that my daughter’s behavior had been very clearly autistic that I was able to let go of the last bit of frustration and truly forgive and forget the whole situation. My daughter would not have chosen to act the way she did if she “got it;” and it would be wrong to judge her on the same continuum as a neurotypical child who truly was choosing to be selfish.
And it helps both my husband and I to classify moments and remind each other that “It’s not her; it’s the autism.” We step back and assess if she isn’t her usual self, then why isn’t she? If she’s moody, was she overcome by the volume, sensory overload? If she’s “disobedient,” did she understand what she was to do? Did we give her time to make a transition? (Timers are your friend!)
And we are able to analyze and hopefully solve the problem, rather than compound it by losing our cool and getting frustrated.