nonspeakers-r-us - Tumblr blog

[nonspeakers-r-us]

Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.

I apologize for the long post. This is important to me. Heavy CW for mention of knives, self-injurious behaviors, description of intense emotions, brief descriptions of restraints and police. Yes, I used the word "severe" to describe my Autism. This is because I am Nonspeaking, very High Support Needs, visibly Autistic, and have a Borderline IDD. This is how I choose to describe my Autism. Please don't attack me for this, Tumblr. Anyways. Darting out into busy streets. Repeatedly banging your head against walls. Throwing objects, sometimes even very dangerous objects such as knives. Breaking things - anything - no matter the value or durability. Unplanned, sudden violence towards self and others. Lashing out, in pure emotion, just screaming into nothing at the top of your lungs, for no obvious reason other than pure, unadulterated, terrifying emotion. This may not seem like symptoms of Autism for anyone, and they may not be caused by Autism at all. But for many young people and adults with severe Autism, this is what our families deal with regularly. "Difficult behaviors", as I've often heard them described as by social workers. There's often no clear reason for then. They just. Happen. We are almost never diagnosed with secondary conditions. It is considered a symptom of our severe/profound Autism. While in many Speaking and Low Support Needs people with Autism, they would be diagnosed with various conditions. Conduct Disorder. Bipolar. Borderline Personality Disorder. Maybe even a severe case of Intermittent Explosive Disorder. But for those of us on the more visible part of the Spectrum, nobody knows how to deal with us. It's scary and heartbreaking for our families, and deeply traumatic for us. Many times, our families and caregivers will turn to emergency services such as police or EMTs when they have no where else to turn. I don't like this option, I hate it. But in moments of extreme panic and fear, I don't always blame families for this. Nobody talks about those of us who have been restrained by our arms and ankles to hospital beds for weeks at a time. Nobody talk about those of us who turn violent on the people we love most, when we just can't control ourselves. I wish I had good advice for those of us struggling with this. I wish I could comfort you. While mood stabilizers and antipsychotic medications have helped me, it doesn't help everyone. DBT for severely Autistic individuals is another thing that greatly helped me. This is a fact of life for many individuals with severe Autism and their families. It's terrifying. But please keep trying treatment, keep advocating for yourself as much as possible, and keep going. I'm sure you don't think this means anything, but you are strong. You are brave. I see you and I want you to keep going. Nobody talks about episodes of uncontrollable emotion and dangerous behaviors in severe Autism.

[nonspeakers-r-us]

Being Nonspeaking and Indigenous

One thing that I have struggled with most of my life is feeling like I don't belong to the communities I am a part of, because I cannot verbally speak my language(s). I am a Sámi and Inupiaq person who grew up with both my cultures being a big part of my life. In Sámi culture, one of the biggest things that connects you to your community is being able to speak the language. I can still understand both spoken Northern Sámi and Inupiaq fluently, but I cannot speak out loud, and I can only use Swedish and English on my AAC. My spelling is pretty bad in Northern Sámi. I can only write Inupiaq semi-well, and I can only write it in qaliujaaqpait (Latin script). This leaves me feeling like I'm not "Sámi enough" or "Inupiaq enough" to use those labels for myself. Many people in both my communities understand this, and have been very kind and understanding. There are many reasons that someone can't speak the language of their community, and disability is just one of them. Just my thoughts today.

[nonspeakers-r-us]

Do you have a favorite type of exotic pet? I used to have guinea pigs and I still love learning about them!

Yes!! I really love reptiles and birds!! Reptiles have been my Big Thing for my entire life, and I also work with birds in rescue!!!!

[nonspeakers-r-us]

It's OK to have different opinions about your Autism than the mainstream ASD community

It's OK to feel like you were benefited from your experience in ABA. It's OK to prefer the term "nonverbal" over "nonspeaking" for yourself. It's OK to prefer puzzle pieces. I know I do. It's OK to prefer "person with Autism" instead of "Autistic person". It's OK to be different. Now, what isn't ok is forcing others to conform to your preferences. If you feel the infinity symbol for Autism is better than puzzle pieces, you shouldn't be unkind to Autistic people who prefer the puzzle piece. And vice versa. This only applies to other members of the Autism community. People who don't have Autism should listen to those on the Spectrum, not what they as Allistic people personally believe is right.

Stop the fighting. Stop generalizing "all Autistic people do/prefer/like [insert thing here]". It's a Spectrum. And that's OK.

[nonspeakers-r-us]

About Me

Hello! My name is Biehtár, and I am a fully Nonspeaking Autistic person from birth. My Instagram is @nonspeakers.r.us and that's where I mainly post! I am new to Tumblr, I'm still learning my way around. About me (Autism Related): -Nonspeaking, full time AAC user -Level 3, High Support Needs -Borderline Intellectual Disability -Diagnosed at age 3 -Visibly Autistic

About me (non-Autism related): -I am Indigenous (mixed Sámi and Inupiaq) and grew up with both of my cultures -I am Visually Impaired -I love Star Wars, exotic pet care (animals that aren't dogs and cats), and jazz theory!! -I love love reptiles and birds -I am a jazz and sometimes classical contrabassist and pianist -I speak Swedish, Finnish, Northern Sámi, Inupiaq, and English! Things to Know: -I use support needs terms, and occasionally the term "low functioning" to describe myself ONLY and nobody else. -I prefer "Nonspeaking" rather than "Nonverbal" when referring to me -I do NOT reclaim the r-slur, but I do not take place in slur discourse either. -I am very new to Tumblr. I am still figuring my way around.

Happy to meet everyone!