There is a book out there called Ten Things Every Child With Autism Wished You Knew! But this is my list, as the mom of a child with autism, for what I wished you knew.
1. I don’t know one parent of a child with autism that went out seeking this diagnosis. Not one of us wanted these “free” services. We would gladly turn in all our special education, physical therapy, occupational therapy, speech therapy, applied behavioral analysis and respite care hours we have accumulated to have a normally developing child. It is insensitive of anyone to think we would seek out this diagnosis to freeload off the school system. Our children will carry this label throughout their school career. They will be opened to teasing and brutality. They will struggle with simply activities you and your child take for granted. Just because some news outlet tells you that autism is the diagnosis du jour do not assume this to be true, because as a parent of a child with autism I pray daily that this disorder will be lifted from my son and that we will be left to deal with those mundane daily items everyone else finds so daunting.
2. If you haven’t done the research don’t presume to understand the disorder. Autism is extremely complex and as our children age, grow and develop, so does the disorder. It is not like diabetes where it has one set of problems that remain relatively consistent throughout the person’s life. Instead it is multifaceted, has a full spectrum of affliction, comes with many co-morbid diseases and changes as the child changes. We have had autism in our lives for 6 years. During that time I have read and researched quite a bit, and yet there are many aspects of autism which I don’t understand. If your knowledge of autism comes from a one hour TV program do not think you understand the disease better than we do.
3. Keeping number 2. in mind, don’t presume to know more than the parents. I’m sure you are well meaning, even if you come across as harsh and uncaring, but we the parents really, truly know best. Especially those of us who have studied the different problems children with autism face. They have sensory processing disorder, executive function problems and issues with Theory of Mind. And if these words are not commonplace to you, then before you determine just how poorly we control our children you should Google those terms and familiarize yourself with what struggles our children face daily. Because their bodies and minds are bombarded with sensations they are not equipped to handle. They are not misbehaving, obstinate or cruel, they have autism.
4. Our children deserve the love and respect given to every other person out there. They are human beings. And as we have seen in our own family, these children are alive inside what we once thought was their own world. And they are watching, learning and remembering. Do not assume because they don’t speak, or they won’t look you in the eye, that they are not present, that you can dismiss them and assume they are furniture in the room. A person with autism has the capability to understand and process all that you put before them, so make sure what you put before them is what you want them to know about you. Treat them with dignity and respect and you will be surprised by the sheer capacity of their minds.
5. The stress of autism is overwhelming at times. It is a constant current that run through every aspect of our lives. Even as our children improve we have no idea of what the future holds. In our home we must plan two lives for Matthew, the one the doctors tell us he will have and the one we hope he will achieve. One requires provisions for a person who can not support them self while the other requires planning for college and other endeavors. We must assume both. We want every normal thing for Matthew, but we must work to ensure that he can do the simple tasks others take for granted. It may seem trivial to you, or simple, yet you don’t have the responsibility we have. So before you judge, step into our shoes, walk around, look at all the small details you may not notice from the outside.
6. Yes they may tantrum or melt down, but realize that typically their bodies and minds are overstimulated by what our bodies find to be normal, dismissible input. For whatever reason, their bodies can not process the sensory stimulation it is constantly bombarded with and often they lash out or melt down due to these inputs you and I would not think twice of. An example would be the flickering of florescent lights. A normally operating fluorescent light has a line flicker which is not perceptible to average humans, but it is noted that those with autism can notice and become disturbed by such a flicker. Their bodies perceive and process this input differently.
This certainly is not an exhaustive list, but it is a list of things I wish you knew.
Stay well.
BRAVOOOOO! Would love to plant an audio loop of this at the pedestrian stoplights in every city… Do you think THEN people would finally get it?
I think the problem is not that people don't know, but that they think they know. Which just goes to show that "a little learning is a dangerous thing…" we should all drink deep from the well of knowledge, before saying anything.
I'm sure it is because people don't know enough, but I'm hoping this gets one or two thinking and reading. If it does, then I've done some good.
Thanks for sharing this information! #5 is the only one I was aware of. Hugs to you and mad props for being a kind, patient mom.
Sometimes we are scared and in turn judgmental of different – but what we all need to remember is that every parent needs love and support as well as children. HUGS, I am clueless about autism but can't imagine ever thinking badly about parents nor children suffering with autism. I have seen great artistic qualities in autism children that went to high school with me!
Jenn and Brandy, thanks for writing. I have heard stories of parents out with their child with autism where strangers have bad-mouthed them, blamed them for not reprimanding their children, etc when intact the child has been overstimulated by something in the atmosphere and the parents are trying their hardest to help the child. It can be very degrading to not know how to help your child any more than you already are, to be struggling to find the answers, and then to have someone call you a bad parent. I know my husband and I certainly look at tantruming children in a restaurant or store much differently than we once did. And those children with iPods, I wonder to myself if this is their reward for holding it all together for a little while. We try not to judge them so harshly.
I know a little about Autism, in fact several of our family friend have kids with disorder's. And I do understand that it is so hard for the parents. ((HUGS))
This is an incredibly touching post. You have such great points, I appreciate you being strong enough to post this for everyone to share.
I currently have my son in a medical research program for autism, he is a control patient but we feel it very important to do our part for autism research. This particular program is comparing the developing brains (at 6 months, 12 months, 24 months) and of younger siblings of children with and without (like my sons) autism and hoping to 'see autism happening' I am proud to have my sons in this study that might help others understand autism.
I can't pretend to know anything about autism, but I do have an ADHD child and know that unless you've experience a child with ADHD, don't judge the parent or the child!