When my son was diagnosed at 2 and half it was based on his deficits. He did not speak. He looked to be angry and frustrated a lot. He self harmed. What people didn't seem to take into account, was that when his needs were being met, he was happy. He also had hypotonia... it is a condition where a person has low muscle tone. It prevented him from drinking thin liquids like juice and water for years and years... it would go down the wrong way, through the air tube instead of the esophagus. He couldn't eat things like soup, both solid and liquid and he had trouble moving his tongue in a way that facilitated eating certain food textures. We did eating therapy to help with that but we also had to give it more time too for his muscles to develop more. I don't think he could speak because of his hypotonia. If it was effecting his swallowing and eating, literally the pushing back and forth of food in his mouth using his tongue, why wouldn't it effect his speech?
We were told to enroll him in ABA, Speech, OT and PT. At that point, the ABA was helpful in getting him to stop self harming which was wonderful because he could have caused his brain and body permanent damage. We did an eating program through speech and it was wonderful. I used the methods they used at home. It encouraged him to explore many different foods without the expectation of even putting them in his mouth let alone eating them or even touching them if he didn't want to. He got to do silly fun things with food like "eat like a puppy" happily eating with just his mouth. He learned that food wasn't scary and miserable, but could be fun and enjoyable. This was huge! It encouraged muscle memory for his tongue and opened up his palate and experience to many more foods.
As he got to be around 3ish he got very frustrated again. We thought perhaps it was because he wasn't speaking so we started learning some sign language as a family. He began using his signs immediately. He told us when he was hungry and when he wanted help. A day came when I was serving him something with his lunch... he took one look at that item and started signing "something different!!!" at the speed of light over and over again. LOL Boy, he really didn't want to eat that! That memory makes me smile and laugh out loud. His frustration and self harm subsided again as he used his signs. Then it came back as he got a little older and had more communication needs and the ABA person suggested cards with words and pictures. I didn't like how the therapist was constantly telling him to "use his words" even when he was communicating in some other way. But, he did like having the cards at his disposal and it did relieve a lot of the frustration... but was cumbersome as he was needing to add more and more words.
At this point we got him an assisted communication device where he was learning to select pictures accompanied by words on a screen. He was learning but was frustrated. There is definitely a learning curve to using such a device. Then, all of the sudden, he started talking, out-loud! I personally believe that his muscles in his tongue had to develop enough for him to use it properly to speak. But I could be wrong. Maybe it was a decision on his part. IDK. I can tell you that once he was able to talk, he rarely stopped talking. LOL
ABA was decent for keeping him physically safe, from himself and from others who might hurt him if he acted out. For many other things, not so much. And for some things, I believe it was harmful. But, my son and I come from white privilege. We didn't punish him for a meltdown directly but there were always natural consequences for his actions which he learned. We never told him or expected him to "act neurotypical" all the time and to blend in. He has been able to become who he is and always was for the most part. But, as a small child, when he, a white boy, had a meltdown in public, we did not have to worry much about someone calling the cops on our child. That is privilege.
Now that he is 12 and getting bigger, I do worry. When he has a meltdown he loses his words. As he continues to grow, when he has a meltdown it will scare adults. He is already sometimes scaring other kids. Right now, adults in charge immediately start asking him questions to try to help which makes it worse cause... sensory overload....and as a boy becomes a young man... adults call the cops and the cops, as you well know, in general, over rely on violence or guns to "deal" with "problems" they do not understand and do not want to understand or deal with.
At 2 and half, my son was given the label "moderately autistic." As parents who knew nothing about autism (I had no idea I was autistic) it was like a box with words on it that couldn't be opened. We had no idea what was in that definition, what it meant. But we learned what other people thought it meant... and it wasn't good. The judgement, the isolation.
Giving autistic people pseudo-medical labels like "profound autism" or "mildly autistic" does lead to people using those labels to separate us and justify how we are treated, what rights we have. You are right, those things ALWAYS go together... and it is not helpful at all. It is hurtful. It is a spectrum. And as autistic people, we are all on that spectrum. And our needs and abilities will and do change from day to day and within the day. That is normal for us.
I really appreciate you, Tiffy, and what you have to say. Your viewpoint, your words, you. Thank you for looking out for ALL of us and for trying to bring us together instead of letting the non-autistic people who would try, keep us apart.
Dawn Marie Zimmerman, As a parent of a non-verbal (until 11) daughter with Down syndrome. I hated labels. Labels might make the professionals feel better but they did nothing to provide better, or more appropriate therapies for my daughter.
Tiffy, I hope by now you know how much I respect you and your advocacy for your child (I'm Nancy E. Ed on facebook). I hear your anger and frustration with systems that work against your children. It makes me so darn mad we still don't do a better job of making sure POC get the same breaks and respect as those of us with white skin. It's wrong and it makes me angry. Much respect to you.
I nodded throughout! You articulate it so well. 💜 I'm Also so tired of being attacked for being in this space and made to feel I constantly have to prove and justify my son and my disability to the very people who should "get" it and be accepting. 😢
When my son was diagnosed at 2 and half it was based on his deficits. He did not speak. He looked to be angry and frustrated a lot. He self harmed. What people didn't seem to take into account, was that when his needs were being met, he was happy. He also had hypotonia... it is a condition where a person has low muscle tone. It prevented him from drinking thin liquids like juice and water for years and years... it would go down the wrong way, through the air tube instead of the esophagus. He couldn't eat things like soup, both solid and liquid and he had trouble moving his tongue in a way that facilitated eating certain food textures. We did eating therapy to help with that but we also had to give it more time too for his muscles to develop more. I don't think he could speak because of his hypotonia. If it was effecting his swallowing and eating, literally the pushing back and forth of food in his mouth using his tongue, why wouldn't it effect his speech?
We were told to enroll him in ABA, Speech, OT and PT. At that point, the ABA was helpful in getting him to stop self harming which was wonderful because he could have caused his brain and body permanent damage. We did an eating program through speech and it was wonderful. I used the methods they used at home. It encouraged him to explore many different foods without the expectation of even putting them in his mouth let alone eating them or even touching them if he didn't want to. He got to do silly fun things with food like "eat like a puppy" happily eating with just his mouth. He learned that food wasn't scary and miserable, but could be fun and enjoyable. This was huge! It encouraged muscle memory for his tongue and opened up his palate and experience to many more foods.
As he got to be around 3ish he got very frustrated again. We thought perhaps it was because he wasn't speaking so we started learning some sign language as a family. He began using his signs immediately. He told us when he was hungry and when he wanted help. A day came when I was serving him something with his lunch... he took one look at that item and started signing "something different!!!" at the speed of light over and over again. LOL Boy, he really didn't want to eat that! That memory makes me smile and laugh out loud. His frustration and self harm subsided again as he used his signs. Then it came back as he got a little older and had more communication needs and the ABA person suggested cards with words and pictures. I didn't like how the therapist was constantly telling him to "use his words" even when he was communicating in some other way. But, he did like having the cards at his disposal and it did relieve a lot of the frustration... but was cumbersome as he was needing to add more and more words.
At this point we got him an assisted communication device where he was learning to select pictures accompanied by words on a screen. He was learning but was frustrated. There is definitely a learning curve to using such a device. Then, all of the sudden, he started talking, out-loud! I personally believe that his muscles in his tongue had to develop enough for him to use it properly to speak. But I could be wrong. Maybe it was a decision on his part. IDK. I can tell you that once he was able to talk, he rarely stopped talking. LOL
ABA was decent for keeping him physically safe, from himself and from others who might hurt him if he acted out. For many other things, not so much. And for some things, I believe it was harmful. But, my son and I come from white privilege. We didn't punish him for a meltdown directly but there were always natural consequences for his actions which he learned. We never told him or expected him to "act neurotypical" all the time and to blend in. He has been able to become who he is and always was for the most part. But, as a small child, when he, a white boy, had a meltdown in public, we did not have to worry much about someone calling the cops on our child. That is privilege.
Now that he is 12 and getting bigger, I do worry. When he has a meltdown he loses his words. As he continues to grow, when he has a meltdown it will scare adults. He is already sometimes scaring other kids. Right now, adults in charge immediately start asking him questions to try to help which makes it worse cause... sensory overload....and as a boy becomes a young man... adults call the cops and the cops, as you well know, in general, over rely on violence or guns to "deal" with "problems" they do not understand and do not want to understand or deal with.
At 2 and half, my son was given the label "moderately autistic." As parents who knew nothing about autism (I had no idea I was autistic) it was like a box with words on it that couldn't be opened. We had no idea what was in that definition, what it meant. But we learned what other people thought it meant... and it wasn't good. The judgement, the isolation.
Giving autistic people pseudo-medical labels like "profound autism" or "mildly autistic" does lead to people using those labels to separate us and justify how we are treated, what rights we have. You are right, those things ALWAYS go together... and it is not helpful at all. It is hurtful. It is a spectrum. And as autistic people, we are all on that spectrum. And our needs and abilities will and do change from day to day and within the day. That is normal for us.
I really appreciate you, Tiffy, and what you have to say. Your viewpoint, your words, you. Thank you for looking out for ALL of us and for trying to bring us together instead of letting the non-autistic people who would try, keep us apart.
Dawn Marie Zimmerman, As a parent of a non-verbal (until 11) daughter with Down syndrome. I hated labels. Labels might make the professionals feel better but they did nothing to provide better, or more appropriate therapies for my daughter.
Tiffy, I hope by now you know how much I respect you and your advocacy for your child (I'm Nancy E. Ed on facebook). I hear your anger and frustration with systems that work against your children. It makes me so darn mad we still don't do a better job of making sure POC get the same breaks and respect as those of us with white skin. It's wrong and it makes me angry. Much respect to you.
"Instead of carving out more ways to separate our kids, we should be fighting for more ways to support them. And each other. And ourselves."
I nodded throughout! You articulate it so well. 💜 I'm Also so tired of being attacked for being in this space and made to feel I constantly have to prove and justify my son and my disability to the very people who should "get" it and be accepting. 😢