No diagnosis means no accommodations
The alarm rings, but Sarah (name changed for privacy reasons) is already awake. She usually wakes up just before the first ringing. She turns off the alarm and tries to sort out her senses. The transition from sleep to being awake is difficult and takes some time.
Just as she was trying to adjust her eyes to the growing daylight in her room her door opens wide and her mother appears. Behind her a bright, glaring rectangle of light from the hallway. It hurts Sarah’s eyes.
“Time to wake up, Sarah! Get ready for school! Breakfast in ten minutes honey!“
The voice is harsh, shrill, and painful in Sarah’s ears. They have not woken up yet. The silence of the night still lays in them and is not ready to be ripped away so abruptly.
Sarah presses her eyes shut tightly and puts her hands over her ears. She starts humming to herself in an attempt to calm her system down and make the transition easier. She gets up before she is ready to because she knows her mother will be back if she does not. And with her the dreaded loudness of her voice.
Sarah stumbles through the hallway, one hand on the wall to steady herself. The ever same texture of the wallpaper calms the chaos in her head that is caused by the bright lights. Her eyes hurt and she can barely squint enough to see where she is going.
“Hurry up Sarah, you’re going to be late!”
She is never late. She knows she is never late. But the suggested possibility in her mother’s words starts a chain reaction of panic in Sarah’s system. What if she was late? What if she messed up one of the steps in her routine and became late?
The voice hurts her ears and Sarah rushes into the bathroom. There she can lock the door and have a few minutes of silence while she gets ready. She goes through her morning routine. Always the same. The familiar steps calm her down again and she manages to get herself ready.
“Are you not downstairs yet? Come on, everyone’s waiting!”
The voice again. Why is it so loud? Sarah is dressed and ready to go. She takes her school bag and moves downstairs. Breakfast is waiting. Another familiarity that she can look forward to. Always the same.
“Sorry honey, we’re all out of cheese. What do you want instead?”
This time the voice does not only hurt her ears, it also brings bad news. No more cheese? Sarah sits down on her chair. Her place. This is where she belongs. She stares onto her table setting and tries to figure it out.
Something else than cheese? But she always has cheese. Cheese belongs on her breakfast bread. Her mind starts reeling. Her thought images start racing. Images of other items to out on breakfast bread. There are so many possibilities. She is not ready to make decisions yet. Her system has not even woken up yet.
“Sarah, honey, you have to decide! You are going to be late!”
Sarah blinks rapidly and starts shaking her foot under the table. But it is not enough to calm her this time. It does not give enough stability and security to maneuver the dozen breakfast choices in front of her. Why are there so many options? Why is there no cheese?
Sarah starts tapping her fingers on the table. Yes, that is better. One, two, three. One, two, three. Her brain calms down, the images slow down. But she still cannot figure out an answer.
“Is jam okay?”
A lifeline. She likes jam. This is a much simpler question, is it not? Sarah manages a nod and a few moments later a slice of bread with jam on it lands on her plate.
The relief is almost immediate. No more decision making. No more loud voices. She can focus on waking up again and does so while she eats. But a little bit of stress remains.
The morning did not go as planned. Not as expected. Sarah’s is reacting to it and she does not even know it. At least the rest of breakfast time goes by without another incident.
Sarah leaves for school. She goes by bike. She wears a bicycle helmet that she hates. It presses on her forehead. It hurts behind the ears. She tries to explain this to her mother but as always she has to wear it anyway.
“Don’t be such a whiner, it’s not so bad.”
Yes it is. But Sarah puts the helmet on as demanded and rides her bike to school. The air is cold. Fresh. Wonderful. But the cars on the road are loud and scary. Every time one comes up behind her, Sarah jumps a little on her bicycle seat. She makes it to school in time and is mostly awake now.
Before the bell rings there is chaos. Always chaos. Sarah keeps her head down. The less she hears and sees, the better. She tries to maneuver her way to her classroom. Everyone is talking at the same time. There are hundreds of children at her school and they all have so much to say.
Sarah walks briskly to her classroom and sits down in front of the still locked door. She waits. While she waits she gently rocks her upper body back and forth. The chaos she just walked through slowly falls off and calmness fills her again. She is awake now. And she knows what will be next. Biology. She likes biology. But she does not like her biology teacher.
Slowly but surely Sarah’s classmates join her in front of the locked door. There is not much space. It gets crowded. Kids bump into her. They laugh. Sarah moves back as far as she can. Until she is all the way in a corner. She hates being touched. Getting bumped into is the worst.
Everybody is laughing, talking, and having a great time. Sarah just wants to run away. To a place with more space. Less voices. But she has to wait here until the teacher finally comes and opens the door.
When the door opens everyone floods into the classroom. Sarah waits. Squeezing through the mass of her classmates hurts her body. She goes in last. She finds her seat and sits down. Relief. There is her space. This is where she belongs. Nobody bumps into her now.
She sets up her half of the table. Biology book, her notepad, her pencil case and pencils, her eraser. Everything lined up nicely. Just the right order. Sarah is pleased and feels safe again.
“Sarah! Are you going to say something or not?”
The voice comes from the front. It is loud. Sarah looks up. The teacher is staring at her. She looks around. Everyone is staring at her. She was not ready yet. She knows she is supposed to give the oral review of the last lesson because that is what the teacher does every lesson – but she cannot.
Sarah looks down. She tries to sort herself out so she can speak. She is not ready. She is still setting up her space. She is still sorting her thoughts. She is still putting all those sensory impressions to rest she had to fight through to get here.
“Well if you are not going to say anything I will have to write down another F.”
Another F. Sarah’s heart starts racing. She knows what to say. She remembers everything. She always does. But she cannot say it. Her mind is racing with pictures. Where are the words?
Sarah starts tapping her foot on the ground and her fingers on her lap. Where are the words? If only she could spit out a movie of what is inside her mind right now. Every little detail. She remembers. But the words are not there yet.
“Alright then. Who can take over for Sarah?”
She missed her chance. Again. She can never do this. Sadness and anger creep into Sarah’s chest. She wants to burst. She wants to run. She needs to move to compensate but she cannot. She must sit still.
She is fighting herself in order to remain seated and stay quiet like she is supposed to in a classroom. But inside there is chaos. Inside there is a volcano erupting with hot lava. Controlling herself takes every last bit of strength Sarah has. Every day. All the time. And it slowly wears her down. And nobody even knows.
Can we fix it? Yes we can!
The alarm buzzes softly. Of course Sarah is already awake but she still loves the vibrating alarm her mother bought for her. No more shrill ringing. Waking up is so much less irritating now.
Sarah turns off the alarm and starts sorting out her senses. The transition from sleep to being awake is difficult and takes some time. Her mother knows this and stays out of Sarah’s room. Only if Sarah does not manage to wake up and get ready on her own her mother will gently offer help and assistance.
Sarah knows she has one hour until she needs to leave for school. She is never late. She goes through her morning routine uninterrupted. She follows the steps. She does everything in her time and in her order. One step follows the next. The next step comes when Sarah is ready.
She gives herself time to adjust to the light and sound of the beginning day. She stays in her room until she can handle leaving for the bathroom. She gets herself ready and when she feels she can handle her family she goes downstairs.
Everyone knows not to talk with Sarah in the morning yet. Everyone leaves her be. Gives her time. Sarah sits down at the table.
“Sarah, can you listen to me for a moment?”
Her mother’s voice is low. Slow. Calm. Sarah nods. Her mother knows to speak with her morning voice right now. It helps Sarah’s senses that are just waking up make the transition from night silence to day levels.
“Dad ate the last slice of cheese. I know we usually make sure that does not happen, but it happened today. I will buy cheese at the store this afternoon so there will be cheese again for you for dinner. Can you eat jam right now?”
Sarah takes in the information she has been given and ponders it for a moment. She always eats cheese for breakfast. Her family knows not to take the last slice because it really bothers Sarah not to have what she always has.
But Sarah also knows sometimes unexpected things happen. And even though this unexpected thing bothers her she manages to stay calm. She had her time waking up. She had her uninterrupted morning routine. She did not have to use any adjustment energy yet.
And her mother offered her a pretty good alternative. Sarah likes jam. Her mother knows not having cheese is hard for Sarah and so she offered her something she really likes as an alternative to make it easier.
Sarah nods. Jam is okay. There will be cheese again for dinner. It took her a while to work through it and decide but her mother waited patiently because she knows Sarah just needs uninterrupted time without any pressure to work it out.
Breakfast goes smoothly and Sarah gets ready to leave for school. Her mother helps her adjust the bicycle helmet. It hurts in a few places. Sarah’s mother asks yes and no questions while making adjustments and manages to adjust the helmet so that Sarah feels comfortable.
Sarah would rather not wear the helmet but she knows she needs it to be safe. She knows she is not allowed to ride her bike without the helmet. She eventually adjusted to the compromise of having to wear it but making it as comfortable as possible.
Sarah has learned a new path to school. The cars on the street used to bother her so her parents figured out a route that leads through the nearby park. There are no cars there. It takes a few minutes longer but Sarah likes it very much.
The new path to school works as a final transition period for Sarah. Her system has time to adjust to being awake. Her senses work properly now. When she arrives at school she is well fed, rested, fully awake and has not yet felt any harmful stress.
After Sarah locked her bike she walks to the front door of her school. She is there before most of the other children because she is allowed to. The teachers are always at school way before the students and so one of them comes to greet Sarah at the front door and walks her to her classroom.
The school staff knows that Sarah is autistic. They know what that means. And since they understand, they all do their best to be more thoughtful around Sarah. After all it does not take much.
Sarah does not have to wait with all the other kids there. She does not have to deal with the noise and with getting bumped into. The teacher unlocks the classroom door and lets Sarah inside.
She sits down at her desk and sets up her things. Biology book, her notepad, her pencil case and pencils, her eraser, her noise cancelling headphones, and her sunglasses for when the classroom lights are too bright. Everything lined up nicely. Just the right order. Sarah is pleased and feels safe.
Nobody else is there yet. She has time to adjust to the classroom setting. She has time to prepare herself for the lesson that is about to start. Biology. Sarah likes biology. And she likes her biology teacher.
The school bell rings. Slowly but surely Sarah’s classmates enter the classroom. They talk and laugh and push each other around. But when they pass Sarah they pay attention not to get too close or bump into her.
Her classmates know that Sarah is autistic. They know what that means. They do not mind being a tiny bit more careful around Sarah. After all it does not take much. And after the class teacher explained to them what it feels like for Sarah when it is really loud or when people touch her, they did not want to hurt her or make her uncomfortable anymore.
Since then everyone is much more thoughtful. And if something bothers Sarah she is allowed and encouraged to let her classmates or teachers know so that the problem can get fixed. She is allowed to speak up but she is also allowed to write a letter because that is much easier for her, than spoken words.
Sarah watches the teacher. She knows it is her time to do the review of the last lesson today. Her teacher told her at the end of the last lesson so she could be prepared. When everyone has settled down the teacher looks at Sarah and nods at her. She knows that means it is her turn now.
“And now Sarah is going to give us the review of our last lesson. Sarah, start when you are ready.”
Sarah nods and looks down on her hands. Her fingers tap a rhythm on the table. It helps her to stay focused. And it is soft enough that it does not bother anybody. Soft enough to let everyone hear Sarah’s voice over the tapping.
Sarah has her thoughts already prepared. She practiced at home. She was allowed to make a note card with bullet points and bring it to class.
The card is in front of her right now. It allows Sarah to put order to her thought images. And the keywords give her a starting point for her words. She reads the first word and remembers all the words she practiced saying yesterday. It does not matter that she is taking a few moments before she actually starts speaking.
Everyone knows she is autistic. Everyone knows that means it is difficult for her to turn the images in her head into spoken words. Everyone is waiting patiently.
Eventually Sarah starts speaking. There is no judgement. There is no stress. She is doing it. She is doing all of it. In her own time. In her own way.
Yes, I admit it: This post is a bit different. Not only is this a two part post (this being part one) but it is also written in a very different manner than anything I have written so far.
The topic “Accommodations” is a very difficult one for me. It is extremely complex. And writing about it comes with lots of triggers from my past that bring lots of bad memories.
Because I did not have any accommodations. Ever. I did not get my diagnosis until I was 24 years old. I needed so much help and I did not get any. This has caused many problems in my life. And it has led to a lot of suffering.
So I eventually decided to start my two part blog post about accommodations with a little personal experience and “what could have been”.
What I just described are very simple everyday situations and struggles. So called “little things”. Things most people do not even think about. I purposely stayed away from the really troublesome things to make one thing very clear:
Yes, big accommodations are important. Big accommodations being ones that cost a lot of money, time, and effort to implement. But do not forget the little things.
If you grow up or live without accommodations I am quite certain that it is not that one huge missing accommodation that will grind you down. It is the little things. They add up. They are the drops that hallow the stone. Little thing after little thing after little thing. Again and again. Day in and day out.
And those little things require nothing more than awareness and acceptance to be fixable. Everything I described above (and much more) can be accommodated with no extra money or time and just a very small amount of effort.
And now that you have a small insight into what difference accommodations can make on a very personal level, onward to part two of this post! There I write about which accommodations are actually useful for autistic people and why we should all strife to make accommodations a natural part of everyone’s life.
Insight from other actually autistic people into the topic of accommodations:
If you know of any other actually autistic people writing about this topic, please leave a link in the comment section and I will add it here. It was way too difficult to find writings about this!