Understanding Autism Spectrum Disorder
Date Posted: January 30, 2018
We are families of children living with Autism and other neurological conditions. We understand each other and the struggles we go through, raising our children that have different, unique abilities.
We have a community that supports us, teaches us, and listens to all of our accomplishments with true joy because we've all been there and live this journey together. We see what others may see as tiny wins, as huge successes because to most people, including our family and friends, those little successes will never mean as much as they do to us.
It is often difficult to explain to our closest friends and family how hard it is to live with a child with Autism. They don't see them every day. They don't see the struggles on a daily basis. They don't see all the hard work and tears we put into our families to make them successful.
What they do see, for the most part, is a child that has varied, unpredictable behaviors and can be inappropriate at times. They will look at this as defiance, or bad parenting, or the child being spoiled because they simply cannot grasp the differences in the way our children's bodies process sensory input compared to that of a child that is considered neurotypical.
Our extended family and friends, especially, don't understand that plans have to be different to accommodate our children who are living with Autism. Our children need their daily structure and routines in order to feel safe, secure and calm. When we are asked to do something that is not routine with our child, we need to explain and prepare our child in advance for these events. With no advanced notice and preparation for our child, we usually deal with tears, fear, confusion and meltdowns.
Why don't our family and friends get it?
Almost daily, we see parents and families of children with ASD and other neurological conditions asking why their own families just don't get it. We see people asking for help in how to explain their children in terms that our families and friends will understand. We get frustrated because we should just simply have to say that some things are too much for our children.
We should be able to say that our children process things differently, so our lives look a little different. We should be able to say to our families that we simply won't be attending and have them understand that maybe our child just can't cope with all of the different sensory input that happens when their routines and structures seem to change, even for a short period of time.
We should just be able to say no and have them understand. They usually don't understand, and there are a few reasons behind their misunderstanding that are common to all of us.
Our families and friends grieve just like we do when we find out that there is something seemingly imperfect with our children. When we started to celebrate the beginning of a new life, they celebrated with us and had beautiful hopes and dreams for our children. They had all the same expectations that we had. When they hear the words Autism Spectrum Disorder, they can't help but fear the worst, just like we do. It's natural.
The exception is, however, that no matter what, ASD will be a lifelong condition that all of us will have to learn to live with. That can be overwhelming. So they grieve because they don't understand what that will look like for our children, and because they are not there to live with it every single moment of every single day, they will never truly grasp the pressure of ASD on the parents caring for a child with Autism.
When we, as parents, first hear Autism Spectrum Disorder, we have already gone through a process of realizing there are differences with our child. We have researched, we have been to all the doctors, we have gone through all the blaming of ourselves, and we have questioned ourselves as parents. In all of that, we are living with our children and seeing the differences compared to their peer group. We are dealing with their meltdowns and their quirks, and we are already problem-solving so we can help them cope with a world that is sometimes too much for them.
The diagnosis comes, and we are given opportunities to help improve our children's lives. We look into all of them, we try them all, and sometimes, we find exactly what our children need in order to be successful through all the trial and error.
We come to a point of acceptance and become warriors for their needs because we are their parents, and we have seen them fail and succeed every single day. Our family and friends don't get to live that experience. They don't see all the prep work we've done to support and help our child be the best they possibly can. They see them for limited amounts of time, not every second of every day.
That being said, their ability to process that our child has ASD becomes harder and harder. They go into denial. They blame us for bad parenting. They blame us for labeling our child, and they tell us how much better we can do. They go through the entire process every time they see our children because it's just too much for them to believe that there is something different with our child.
Creating boundaries and educating our families
With that in mind, we still need to be very specific and clear with our boundaries as far as our children are concerned. Our families and friends love our children, but may resent a diagnosis, or may begin to resent us, and possibly our children if we aren't clear about what it is our children need.
We are the parents, and we are very well aware of what our children need because we see it every single day. Here are a few suggestions when educating your family about the needs of your child with Autism Spectrum Disorder. Remember, they may not be quite ready to hear all you have to say, but as we continue to educate them, they will begin to understand.
- Autism is not a disease, it's a different way of thinking and processing our world. Nothing you or I did created this and nothing that we know of is a certain cause. Having Autism is not defining my child, it's just a part of who they are. Please respect that they learn differently than we do, and understand that as a parent, I will always be looking out for the very best solutions for my child.
- My child is not having tantrums. My child is having meltdowns because they are completely overstimulated by their surroundings. Understand that if we have to leave early, or can't come at all, it's because I am looking after the well-being of my child. Imagine what it would be like for you to see the world as it is but 1000 times louder, clearer, and more intense. This is what my child sees and feels every day. I think my child is coping pretty well, don't you?
- Don't feel sorry for my child. Help my child learn to be the best they can be. Come stay for a day. Learn some of the therapies. Learn how to speak my child's language. It's different than yours. Just because it's different, it doesn't make it wrong. When you speak to someone that is hearing impaired, you use sign language. If my child isn't verbal they still hear everything you say. With my child, you need to learn their language. It's not a bad thing, just different.
- Please don't ignore my family because we are facing ASD as a unit. We need your support, understanding, and love more than ever. We are learning to do what's best for our child and us. Be patient with us as every new day is a learning curve for us as well. If you are ever interested in learning, we'd be more than happy to share.
- My child is not spoiled. Autism is not the result of poor parenting choices. My child needs just as much love and acceptance as any other child and needs to be surrounded by people willing to face our challenges together. If you are willing to help, please do. We can use all the love and support we can get.
- My child doesn't respond well to overstimulation. My child can become overwhelmed by bright lights (including sunlight), a change of routine, a noise, or a smell, among many other sensations. When planning a vacation that involves us as a unit, we prefer to keep it quiet and peaceful so that we can maintain as much structure as we can for our child. Our family may prefer a trip full of adventure, but our child may not be able to cope. Please ask us before you plan a trip with us.
- My child is a beautiful, unique, intelligent individual. My child will learn differently, but will still have the ability to do the greatest of things. Please don't feel sorry for my child because of the diagnosis of Autism. We are doing everything we can to learn how to make our child's life the best it can be. Please don't think that we are making poor choices. Trust us when we say we know what's best for our child.
- Autism is not a disease, there is no cure, but there is treatment. We are making sure our child receives every opportunity available, to make our child's life the best it can be. We'd love your help in following the structure and routines needed to help our child function in a world that wasn't built for them. Help us educate people. Please!!
- We are doing the best we can. Please don't judge or criticize. We'd prefer you stand behind us and trust the decisions we are making in regards to our child. We want the very best for our kids, just as you do. We will always do everything we can to ensure they have everything they need.
- Just because I need to parent differently, does not mean it's wrong. Comparing our family to yours, or to a more typical family does not help us to feel the acceptance we need to move forward. We'd prefer your support, and we will answer any questions you have regarding what we are doing, what we have done, and what we will continue to do for our family.
- Our child has Autism. It's not a made up thing, and it's not an excuse. It's the way it is. We have a child that simply learns differently.
- And most importantly, we'd appreciate your support, it can be a very lonely and isolating journey, so please be an understanding and supportive.
Acceptance is key
Remember, our friends and family may distance themselves until they learn how to communicate with our children. That's perfectly fine. In the community we've been brought into, there are always supports available, and more often than not, those outside supports become our inner circle.
It will get easier to deal with family and friends. One day we won't have to explain a thing. Simply saying no should be all we ever have to say. It's enough. It's more than enough and requires no further explanation.
When our family and friends are ready to accept us, they will. We, as parents got thrown into this ASD journey, and we still have our moments where we wish for 'normal'. For them, they mostly see the 'normal', so it makes it much harder for them to understand.
Remember you are doing a fantastic job and we are all on this journey together!!
Autism is not a disease, it's a different way of thinking and processing our world. Nothing you or I did created this and nothing that we know of is a certain cause. Having Autism is not defining my child, it's just a part of who they are. Please respect that they learn differently than we do, and understand that as a parent, I will always be looking out for the very best solutions for my child.