Autberg

My first idea to helping Alexiss understand the parts of themself that are not typical and give Alexiss points to use to advocate for themself was to take the DSM-5 criteria and break it down then merge that to words I see used within advocacy groups.

Graphics are great, but I've still yet to find one with the same categories. Add in that some advocacy groups do not include voices of Autistic people and it can be a hard place to deciding where to even start. 

I went straight to the DSM-5. I hate the word disorder and deficit. If I could fix the world in a day, I'd strike those words out of the criteria. It's only a disorder and deficit in a neurotypical world from neurotypical perspectives that everyone should be more typical. Autistic people are simply different and a minority, they are not broken, they don't need to be fixed any more than brown eyes need to be changed to be blue. It is a difference in brain function, that is all. 

Whenever Ali tries to open up and explain that they are autistic, it's usually met with friends honing in on what they can see and figure that's all there is to it. They can't even perceive that communication style and perception are a part of that. That with work, Ali can understand the nuances of communication and can become neurotypical. When miscommunications happen, Ali tries to say she doesn't understand the situation because she's autistic. They are expecting Ali to pick up on "hints" instead of spoken literal words. Why is it, Ali is made to conform? Why is it people can't just be more literal and say what they mean. Why must they be so cryptic in a facade to be polite?

Others take it an an excuse with impatience or a "disorder" with pity. Neither bridges the gap, neither shows acceptance and awareness. None help foster honest communication. Ali's brain is different, it works different, you can't expect brown eyes to change to blue just because you think they should. Maybe it's age, maybe it's the typical world not having exposure, maybe it's driven by pressure to fit society's "normal" box. 

My next step was to break those criterias down to easier terms and merge it with terms I see used often in Actual Advocacy groups and traits that Ali could relate to. Then to take it one step further, I broke it down into what people probably notice and what they may not notice or understand is a part of being autistic. 

I showed this all to Ali yesterday and it's posted with permission. I do not claim to speak as an advocate without an autistic voice behind me. It's a first draft and I'm sure I'll have some edits, but it was a good start. Ali agreed with it, learnt some of the things that are unique to the autistic mind and had some happy "a-ha" moments. 

We all take for granted a certain level that talking things out, we all come to the same basic understanding. We think everyone thinks like we do on a grand scale. It's not until these differences are presented that we can start to find true communication. 

Even in my world of grown-ups, it's very misunderstood and most times met with confusion. I get it, what a concept that there's people that are different that don't or can't be "typical" and that their lack of fitting in is a disorder that needs to be fixed. How unaccepting of a message for these kids. I can't even advocate for Ali among my peers and be met with an open mind. Autism has long been treated as a disorder and deficiency. As a society, we need to stop. The invisible box everyone needs to fit into needs to disentegrate. 

Hello again!

It's time to start this up again! It's been a long time, but the privacy was as necessary to me as starting this back up is. This is where I find my best voice, where I have time to think about my words, where I won't get cut off and where I don't see your expressions and reactions to my words. You see, I'm a sensitive soul that has learned to exist means to morph and tiptoe around without offending. That's a truly impossible task for me to speak my truth and share life. 

Being quiet for so long has disadvantages. It's disconnected so much. It was necessary to stop sharing Ali's story until they could give consent. It was no longer my story to tell. It's also taken many years of being a sponge from many different views to bring it all together.  

I guess the start of the pause was putting pieces together to understand Ali's anxiety, behavior, thoughts and actions were not as easy to put a finger on than all the help I was asking for could provide. I started seeing signs that Ali is autistic years before anyone would listen. Alli presented all the female traits and most testing and assessments are based on male presentation. That was a battle in itself. 

You may wonder, why bother at all? The easy short answer is that I didn't want Alexiss to grow up feeling like the odd one out. I figured, as a mom, if they understood themselves, they would see what I see. Not an odd different kid, but a brilliant different minded unique kid. Not a kid that doesn't understand people, but a kid that doesn't understand typical people that was just as valid and had just as many rights to be. That they don't need to change.  

We paid for an assessment, right before covid, while Ali exhibited some autistic traits, it was borderline. Not enough. "They" don't like labeling kids because to them the impact is negative. Never thinking it's the reactions of the world driven by experts needed to change. This was followed by a recommendation for a social skills class and some ablest therapy sessions which I quickly stopped. 

Covid was a blessing as it gave Ali a safe bubble to be Ali! It gave me the space to support Ali, to foster Ali to drop the masking and be themself. What a gift! 

Once again, we paid for a private assessment and we're lucky enough to get someone who cares and actually took extra time to consider and research how girls present as autistic. I could not tell Ali my suspicions. Due to masking for years, it was natural for Ali to change to what was expected. It was heartbreaking to not be able to share this whole world with Ali, yet. A place where others understood that being autistic doesn't mean broken, weird, odd or just plain strange. 

Finally this spring! Ali got the diagnosis this spring! 

Now that we've had time to adjust and understand a bit more, Ali's finding the need to understand more and be able to advocate for themself! This will be my journey as I help Ali with tools, views and thoughts.