The loudest voices on social media forget the severe side of the autism community. They ignore those who need the most support and acceptance. They often forget both, those who live with severe autism and their loved ones. They are the forgotten ones.
The Autism Cafe
I know this will be a controversial topic. I know there will be hate. This is something that is weighing heavy on me for a multitude of reasons. For one, I have a child who is autistic. I also have other family members that are autistic. My last hope for this is that it allows someone to see that every side of the autism community is right in some way. I also hope that I can bring light on the fact that parents of autistic children are NOT trying to "force change" upon our children. Our children are perfect how they are. We only strive to help them where we see them frustrated and struggling.
As a mom to an autistic child, it is hard to watch him struggle with things that come so natural to some. Communication is a big issue for my little. Some would say that because I have him in speech therapy, I am abusing him. Those same people would also say that I am trying to force him to talk. That honestly couldn't be farther from the truth. Why? Well because he tries to communicate with us. He gets really frustrated when he is unable to tell us what is is he wants or needs. That isn't fair to him. He DESERVES a voice!
Now that we have established that, let's talk about giving him his voice. As his parents we DO NOT care HOW he communicates with us. We follow him from here to there in hopes he will show us, somehow, what he wants or needs. Sometimes, he is able to tell us with this gesture and other times he can't.
He is unable to read or write. He does not yet recognize the letters of the alphabet. So that is not yet an option.
Picture systems are fantastic. That will only work if the autistic person understands they need to point to the picture of what they want or hand it to the person they are trying to communicate with though. If you cannot agree with that simple logic, then you should not be telling me how to communicate with my son. Sorry, not sorry.
Tablets or other AAC devices are amazing ways to communicate. The majority of the general population would be able to understand exactly what is trying to be said by someone who is autistic. However, the autistic person has to be able to work the device. My autistic child is not interested in learning how to use these devices. We have worked with him on it some and he just isn't interested. So we didn't force the issue. Still think I'm not following my child's lead?!
We are currently working on sign language. We only know a few signs, but he likes it and signing allows him to use his voice in conjunction with the signs for when he wants to use his voice. Or he can use his voice without sign and vice versa.
We have NEVER forced our son to learn anything that he didn't take interest in. It's rude! It's upsetting for him and just sends him into a meltdown and that isn't fun for him or for us. We don't want to see him doing something he hates. Non autistic people don't want to be forced to do things they don't want to do and I don't see forcing him to do it either.
What we do see, is our son desperately trying to communicate with us. He is verbal, but majority of what he says is echolalia. He communicates only certain things verbally and he only communicates those specific things between 20 and 40 percent of the time. So, we see him struggling a lot, but we will ALWAYS try to meet him and follow whatever lead he gives us. Unfortunately, he doesn't always give us any clues. He likes speech therapy. He asks to go in his multitude of ways. He loves the therapist. She meets him where he is and works with him based on the lead he gives during each session. It has taken time and some trial and error to find what he does and does not like, but we are doing it with him.
Stimming seems to be a big thing that the autistic communities discuss. My personal opinion on it is that it helps him to self regulate. If they aren't going to hurt themselves or anyone else, I see no reason to interfere. In fact, it is one of the things that our family loves! We love to see him "happy" stimming. I hate to see anyone upset so obviously I don't like it when he is "unhappy" stimming, but again, if the behavior is not self destructive or dangerous to others then he needs to be able to sort through it in his own way.
However, I have also seen some say that they interrupt stims because it is distracting and things of that nature. All I can really say on this is that autistic or not, we all work through things in our own way and that we all need to work through them in our on way to get through whatever it is. I think this needs to be considered a little more because unless there is danger of someone being hurt, stopping them is like telling them that their process for coping is wrong. Don't come at for this, this is just how I feel. If you feel differently, then you can politely tell me why. If you come at me nasty though, expect nasty back. I respect those who show me respect, period.
Now, let's talk about the symbols. I know this one is super touchy! Maybe I can help someone else see a point of view they haven't thought of. Maybe someone will teach me something I haven't thought of. Let's just try to have some respect with it though, please.
First off, the puzzle piece was not actually brought to life by Autism Speaks. Which I will voice my opinion on a little later. Let's stick to the puzzle piece for now. There are many views on this piece and I can see why there is some controversy on it. The initial meaning though, was that autism is "puzzling" and hard to understand. In this time, it was a LOT LESS understood than now. Although even now, it isn't 100% understood because we do not know where it comes from, what causes it to happen to those who have it and because the spectrum is SO BROAD! No two autistic people are alike. They may have some of the same "symptoms", but they each handle their diagnosis in their own way. Some are verbal, some are not. Some communicate in other ways and then some are not able to communicate at all. They stim or they don't stim. They have sensory processing issues or they don't.
Some say the puzzle piece is used to say their is a piece missing from the person who is autistic. I can see why this would be offensive, but this wasn't the original idea behind the symbol.
From my personal experience as a caregiver to an autistic child, I see where this diagnosis is puzzling. I'm sure that my son doesn't find it puzzling, he knows exactly what it is that he wants even when we are unable to help him. He is puzzling to us. It doesn't make him less important or damaged though. Nothing is missing. He's just a mystery sometimes and he needs us to solve it for our benefit, not for his. His "voice" and his wishes and hopes and dreams all still matter. The autistic community deserves everything out of life that there is to offer.
Then we have the infinity symbol. I'm still new to this one so I don't know as much about it, but I do like what it stands for. It stands for acceptance of those who are autistic. There was so much stigma around the puzzle piece and the incorrect meaning of it being a hate symbol that stood for a missing piece of an autistic person and there needing to be a cure. Truthfully, I understand why autistic people want acceptance. Especially those who are able to do for themselves. They may have a different way of doing things, but they do not deserve discrimination because they simply function in a different way than we do.
I feel like sometimes as a parent, the autistic community forgets that not all parents are FORCING their autistic children to "become normal". They fail to recognize that it is hard for any parent to not be able to communicate or comfort their child regardless of if their child is autistic or not. They forget that to accept autism, means throwing away all of the things you imagined for your child - not because those things can't still be done, but because we have to do it in a different way that suits their autistic child. So yes, we do grieve. We grieve for the things we hoped for our child because without the grief, we can't begin to accept that we just have to take the scenic route. Honestly, the scenic route has a lot more adventure and is a lot more fun!
The autistic community is fighting for acceptance, but for those who are actively fighting parents and caregivers about their choices for those they care for, you're giving out the same discrimination that you are trying to get away from! There are some autistic people who do not communicate at all! They don't use AAC devices, they aren't verbal, they don't read or write or even use sign language. Who are you to say that they will tell us what they want when they aren't communicating at all! If they aren't presented with different options, how would use caregivers be able to tell if they want to try them or not?! I know if we hadn't presented our son with those options, we wouldn't communicate at all with him to know that he likes sign language! As long as it isn't forced and only offered, it shouldn't be a problem. Autistics can't possibly know their options and make choices for themselves if they aren't presented with opportunities - no one could.
This brings us to labels. High functioning or low functioning, levels 1, 2 and three. For those who were diagnosed years ago, there is also Asperger's. No one "likes" a label. For autistics that communicate and can fend for themselves in society, you have the means of telling someone that you communicate via device or via pictures or sign language. You don't need that label. Without the labels though, autistic children and adults who are unable to communicate at all, wouldn't be understood because unfortunately, someone out there would be frustrated with them for not using their AAC device or PECS or sign language or even plain old pen and paper.
However, we should all be able to agree that the autistic community is different from the majority of people. Different, as in differently abled. Why is this? Well, it is because autistic people don't need a cure. There is nothing "wrong" with them. They are simply different in a way that is absolutely beautiful! As a parent of an autistic child, I am grateful our family gets to learn new things together that we normally wouldn't have even thought of if it weren't for our son. A cure is not necessary. We just have to get out of our head long enough to see another way. We have to be accepting and open to new ideas and to the fact that NO TWO PEOPLE are the same - and that goes for autistic people and non autistic people.
You may not need a label. Right now, for his safety and for medical purposed or God forbid there ever be an accident - my son needs one so that others will be more aware of what he can do and the things he has not yet learned or chooses not to learn/do.
This brings us to disability. Autism is a disability. I understand that some of you don't look at being autistic as a disability for you. That is PERFECTLY FINE! Seriously! I am so happy for you that you are able to be yourself, live alone, work, communicate your needs and wants and everything in between. That is just YOUR life being autistic though. These aren't things that all autistic people can do though. I know people on both sides of the spectrum. I know some autistic people who can manage day to day life just fine. They don't need help from others and know how to not just fend for themselves, but live for themselves independently. I know some autistic people who are absolutely not able to do anything for themselves. They wouldn't eat if they weren't given food, they are not able to work a job which means they certainly cannot live alone because they wouldn't be able to afford housing or clothes or food to eat. Therefore, while you may not view your autism as a disability then we would have to view everyone's autism that way; and those who are on the end of the spectrum that are unable to do the things you can do wouldn't be able to draw SSI or SSDI to help their families in supporting them.
You don't like the puzzle piece because you think that we need to bring acceptance instead of awareness; you can't get acceptance without awareness though. How can we realize the true meaning of the puzzle piece for what it was originally intended and incorporate the infinity symbol so that we bring both - awareness for people to learn and acceptance so that autistic people aren't pushed aside like their "voice" doesn't matter?! We need both! Yes, I said "we". I stand by my son. I support HIS WANTS and let HIM LEAD. I am his "voice" until he can use his own - and he can choose whatever he wants as his voice because HE is the one that has to live with it and use it to communicate - not me.
What can those of us who are truly in this community together (autstic, cargivers, parents) do to learn to accept that what didn't work or scarred one autistic person, might just be another's saving grace?! Your parents may have forced you, but all parents are not forceful of these things with their autistic children. I have FIRED many therapists and doctors who didn't agree with my belief of how my son deserves to be treated. So, why can you not accept that he isn't able to fight his battle for himself yet, but I still let him guide me in his own way?
END THE CONTROVERSY! WE ALL JUST WANT WHAT IS BEST FOR THOSE IN THIS COMMUNITY (well, most of us do anyway)!
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