Autistic Confessions I Had a Meltdown at Work

The woman on the phone was not listening. I had called her for help and quickly realized that she would not be able to help me.

“I told her never-mind. I’ve made a mistake. I’m going to let you go.” She kept asking questions. Every question she asked I said – “I don’t know. I don’t have any more information. I am going to let you go.”

She kept asking. I told her again – “I need to let you go. You cannot help me.” Her overly helpful insistence that I not hang up the phone was about to make me blow up.

Finally, in a harsh tone I told her – “Look – I was trying to be nice but I am hanging up now because there is NOTHING you can do for me.”

I slammed down the phone and ran quickly out of our office in a panic. My heart was beating fast and my mind was racing. Everything was a blur. I wanted to scream, cry, and hit someone. More than anything I wanted to get away and be alone.

Run. Run. Escape. Escape.

Bursting into the hallway I frantically looked both ways – I wanted to go someplace without people. The bathroom? Elevator? Emergency stairwell! 

Hyperventilating I burst into the stairwell. It was dark and quiet as most people take the elevator. I rand up and down the stairs until finally I collapsed exhausted on the bottom floor.

I sat for a moment, curled in a ball rocking. Grateful for the moment alone – I sat breathing in and listening to my breaths.

Coming back to reality, feeling much better after my tiny explosion (this was a very small meltdown), I realized that I had left my key-card in the desk as I ran out in a panic, so I exited the stairwell and took the elevator back to my floor.

Back at my desk I sat down like nothing ever happened – as if I hadn’t just had a meltdown at work.

 

When an Autistic person is having a meltdown they are unable to think clearly. The flight or fight response is triggered so forcing them to engage with you can actually cause more stress.
We are all unique individuals but I like to be alone during a meltdown. If I get up and run away don’t chase me – this is flight and if you corner me my brain can switch to fight. I’m on autopilot and running has become the way I protect myself (and those around me).
If I’m having a meltdown please do not touch me. My senses are whirling out of proportion and I am not thinking clearly. I may become unable to communicate other than one word answers and trying to communicate makes me feel worse – so don’t ask me explain what’s happening.
If you are in the room with an Autistic person having a meltdown – turn off the lights, get them a blanket or pillow and some space. A favorite stim toy might also be a good thing to offer.
You can stay in the room if the person you are with does not mind, but give some space and sit quietly.  Accept that they can’t control what is happening to them. Sometimes we feel the meltdown coming but other times it hits without warning.
Once started the meltdown has to run its course. Just wait, let me meltdown and don’t try to stop it. We may feel tired after a meltdown but sometimes we may feel a relief as the pressure may have been building for quite sometime.
Remember – as hard as watching a meltdown may be for you having a meltdown is horrible for an Autistic person. The pain is mental and physical. Autistic people having meltdowns are in crisis mode and our brains are lashing out at us. We don’t mean to freak out and are often embarrassed after having a meltdown.

#ActuallyAutistic

DSM5 – Diagnostic Criteria for Autism Spectrum Disorder

I am not a fan of the medical jargon, but I feel it is important that for the record this information be provided to my beloved readers here.

I disagree with the pathology. The words below dehumanize but they are an official description – one that can grant or deny services, help, and accommodations.

To my readers – I love you and you are perfect just the way you are!❤

Also – I can take NO credit for the text below. I do not own the right to it. This information is below as a reference.

Diagnostic Criteria for Autism Spectrum Disorder

The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5)  provides standardized criteria to help diagnose ASD.

    1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):
      1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
      2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
      3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

    Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

    1. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
      1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
      2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
      3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
      4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

    Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

    1. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
    2. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
    3. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

    Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

    Specify if:

    With or without accompanying intellectual impairment

    With or without accompanying language impairment

    Associated with a known medical or genetic condition or environmental factor

    (Coding note: Use additional code to identify the associated medical or genetic condition.)

    Associated with another neurodevelopmental, mental, or behavioral disorder

    (Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].

    With catatonia (refer to the criteria for catatonia associated with another mental disorder)

    (Coding note: Use additional code 293.89 catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

I do NOT own the text above source here at CDC.gov.

I’ve Been Blogging for 1 Year – THANK YOU

Today, December 4, 2016 the AnonymouslyAutistic Blog turns 1!

When I started this blog a year ago I never would have guessed that it would have grown so much. I started writing after months of depression over the problems facing Autistic people all over the world.

I spent the first thirty years of my life misunderstood and now – thanks to all of my readers – I am finally spreading the truth.

To my readers – each and every one of you has inspired me to keep writing and keep sharing. Because of you the vast inner-world of my inner-voice has been set free.

I hope that some day the voice that comes out of my mouth is as strong as the voice that radiates from my keyboard but until then I am thankful for today and the accomplishments that it brings.

 

Until then, I am still yours.

Anonymously Autistic,

Anna

 

I Live By The Rules – My Own Rules (Autism and Social Rules)

I live and learn by rules.

Social situations are unnatural to me and simple social skills that “normal people” learned naturally were completely lost on me growing up. The way I learned social skills was a bit different and required a lot of trials and errors.

Every time I had a social blunder I made a rule, to try and not duplicate the same mistake again. Sometimes the rules I make are not quite perfect so I have to tweak and change them.

Below are 10 of my  own social rules:

  1. Say hi to people when they look at you.
  2. Smile at people when they look at you and look friendly. (My resting natural face is serious and can be off-putting.)
  3. If a next step is needed compliment something about the person in front of you or add a quick comment about the weather.
  4. Act friendly in public – smile and laugh when people tell jokes. (I forget that laughing on the inside doesn’t count when you have a blank flat face.)
  5. Don’t bring up your special interests unless someone else asks or is on that topic.
  6. Be careful NOT to talk too much. (I limit myself to one or two sentences at a time to give people time to talk.
  7. Wait until you hear a LONG pause before talking unless someone asked you a question. (I NEVER know when it is my tern to talk – the pauses sound like eternities and I still end up interrupting even when I don’t mean to.)
  8. If somebody turns their body away from you let them leave and don’t keep talking. (I also have a hard time ending conversations.)
  9. Let the other people talk and practice listening.
  10. Try to remember what you friends have going on in their lives. Remember to bring theses things into conversation if timing is appropriate. For example – if your friend tells you they have a sick loved one – don’t forget to ask them how that person is doing the next time you see them.

“You’re Obsessed with Autism”

“You’re obsessed with your Autism. Ever since your diagnosis you talk about it all the time. You never spoke about these problems before.”

Keep in mind NONE of these people know about my blog. Imagine how obsessed they would think I was if they knew I had an Autism blog and contributed to a popular disability website. These are things that certain people will never understand.

I want to help. People should not have to suffer in silence.

I never know what to say in face to face conversations with friends and loved ones who doubt.

Finally after years of suffering in silence I am talking, speaking up and trying to speak out. Face to face the words never come.

My entire life I was “sick”. Doctors could not find anything physically wrong with me. They told my mother it was all in my head and that I needed to toughen up.

Finally I have an answer. The truth – and it feels liberating.

As a child I was tired of being looked at like I was crazy and told that I complained too much so I stopped complaining.  Nobody believed me anyway.

Just because I stopped talking about my discomfort does not mean it went away.

I still lived with constant headaches, nausea, and even physical pain – the more severe symptoms of my Sensory Processing Disorder. Before I would suffer, pretending everything was alright, smiling through the pain.

“You used to be such a positive person.”

Now that I advocate for myself and speak up with I am uncomfortable or not feeling well I am a “negative person”.

Why does this stigma still exist? I’m not trying to be negative, I’m sharing my world with you or asking for help.

Nobody wants to know how you are really feeling.

People have accused me of using my diagnosis to get out of things, but really the things I try to get away from now are things that have caused me pain my entire life.

People can be down right nasty when you try to paint Autism in a positive light. They feel as if you are dismissing their struggle, but I feel like there is already enough information on the internet talking about all the hardships and problems. If you don’t know where to look that is all you’ll find.

My diagnosis is a little paper that says “You’re not crazy – yes your body does have a mind of it’s own. Love yourself.” I chose not to get hung up on the negative and try to always focus on the positive.

“Anna is an exceptionally bright woman on the Autism Spectrum she suffers from [. . .] ” Let’s not worry about the list that comes next. I can’t live my life drowning in negativity.

I’m not a special snowflake. I am just a girl trying to live an authentic life while loving and accepting herself – Autism and all.

 

Autistic Confessions – I Don’t Handle Last Minute Changes Very Well

When I set out to do something I need to know the end time and like to know what to expect.

For example if I go to an event, even a very busy and loud event with lots of people, I am able to get through it as long as I know when I will be leaving. During the event, I conserve my energy accordingly so I can last.

If you make me stay later at an event I may not have enough energy to get myself home without breaking down. I try to hold things in but depending on how much longer things run, I might cry or have a meltdown .

Another example is when guests visit. I need to know how late people will stay. If my guests stay extra days it will stress me out because I won’t be able to recharge while there are extra people in the house. Entertaining is exhausting to me.

A last minute request as I am planning to leave work can send me into a silent rage, but will smile and act like everything is alright even though I am panicking inside and the world is swirling.

Even if I smile and agree – I need to stick to the plan and last minute changes stress me out.

Coming Out Autistic – When You Don’t Believe

Coming out Autistic is hard. It’s even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like –

“Why are you complaining all of the sudden? You never used to talk about Autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.” 

 

These people are less than half right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people nobody believed me – so I stopped.

When I was in school I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick to. The doctors told my mother that there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up so I spent my life sick, in pain and discomfort.

My mother told me I had to go to school or she would go to jail, not wanting to loose my mother, I sucked it up and went.

Side note – remember Aspies take things literally. Be very careful what you say to your children.

 

I suffered in silence for thirty years.

I’ve always been different, but my mother told me never to reveal your flaws – so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard, was what eventually lead me to an Autistic Burnout (Autistic Regression).

Finally as my sensory symptoms intensified, after years of confusion and being told that “everything was in my head”, at the age of 30, I received a formal Autism diagnosis.

Am I happy to have a disability?

No. I was chronically ill my entire life and everyone always told me I was faking it. I am happy that FINALLY a doctor has an answer for me. After years of searching I know WHY I am always sick.  I am happy that I finally have the answers and information needed to take care of myself.

I am happy to know that my “illness” is not something more serious or terminal. Part of me used to think that I might have some sort of cancer or rare disease that might kill me some day. This thought is gone now.

They are also correct about my obsession with Autism being recent. 

I was Anonymously Autistic for thirty years and didn’t even know it.

I never spoke about Autism before learning about Autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero) I didn’t know what Autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about Autism.

Here is where people always get things wrong. 

I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger. 

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain”.

I am reminded of my mother’s words – “You’re not dying – get up!”

They don’t know about the secret headaches and physical pain caused by certain sensory experiences – if I try to tell them they accuse me of complaining or exaggerating.

I’ve been getting up and acting like everything is okay for a long time now. It’s tiresome but apparently I’m so good at passing that even some of my closest friends can’t see (and refuse to believe in) my Autism.

It hurts that they think I am lying or crazy, but I try to remind myself that they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been very supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Coming out Autistic is hard for a multitude of reasons – people don’t believe you, people don’t know what Autism is, people think Autism can be cured, people think Autism only affects children, the list goes on and on.

Hands down the worst thing about coming out is when you try to come out to someone close to you and they basically tell you – “No, you’re making this up. There is nothing wrong with you.”

Cut down like a tree.

When you don’t believe it hurts so bad that I want to stop sharing but I can’t because the world needs to know – for all the other Anonymously Autistic people in the world.

#AnonymouslyAutistic #ActuallyAutistic #SheCantBeAutistic

 

 

Autistic Confessions – I Can’t Do Black Friday

To all of you who are out to day in the Black Friday madness, I wish you safety.

Black Friday is not a very friendly day to be out in stores that normally drain my sensory systems even when they are not packed beyond capacity. Shopping in a crowded store is instant overload for me.

If you’re looking for something Autism friendly to do on Black Friday – a nice picnic at the park feeding the ducks might be a better option. Black Friday is NOT Autism Friendly (and I don’t have the cash to spend) so I will be staying home or going for a hike in the woods with my dog.

To all of you who brave the madness – be careful. No item is worrth your saftey. People can act like animals when money is involved. #sadbuttrue

I’m Thankful for YOU

Ready or not the holidays are here. This Thanksgiving I am thankful for all of the people in my life including every one of my readers. I have been blessed with so many amazing people – in the real world and online.

When I started this blog I never would have imagined the response that it would created. I was just writing to work some things out and as I typed so did my readers.

In a flood of questions, comments of support YOU my readers encourage me to keep writing and tell me not to stop.

Some days I cannot even keep up with all of the emails and blog comments. Honesty it can be a bit overwhelming at times but I am always grateful.

I truly believe that focusing on being grateful for all the things that you do have and not focusing on what you are missing is the key to a happy life.

This Thanksgiving what are you thankful for?

Learning to Say No – The Best Gift I Could Give Myself This Holiday Season

People don’t understand my limits when I feel too overwhelmed at the end of a long work week to go out on a Friday. They take things personally when I decline their invitations.

I used to get caught up in upsetting them. One one day, like a light bulb, I realized that I was not responsible for their feelings.

Taking on too many things is not good for my health. Social activities, although enjoyable, are very tiresome to me especially if they take place in a busy environment.

I may choose to stay in, but that doesn’t mean that I didn’t want to go out.

I’ve learned that limiting activities that drain my brain, especially during and around busy work weeks, is something that I have to do. If I don’t conserve my energy at home, I won’t have the energy to do my job.

My job can be stressful but it’s actually a very fun job and I enjoy it.

I always want to be fresh and ready to do my best at work. That means taking care of myself – mentally and physically, eating healthy, and getting plenty of rest. I need to be sharp in order to work.

I have to say “no” to people. Some people get tired of hearing “no” over and over.  I’ve lost friends over this. It sucks to loose friends but my health has to come first.

Why do our parents teach us that “no” is a dirty word?

I think “no” is a wonderfully empowering word. Learning to say “no” has set me free.

No – I won’t do it anymore – not if it’s not good for me.

Learning to say no was the best gift I could possibly give myself this holiday season. This year, I hope that I can somehow give this gift to you.

 

With love and thanks,

Anonymously Autistic

“Anna”

 

#ActuallyAutistic – This site is intend to inspire through sharing stories & experiences. The opinions of the writers are there own. If you have a medical question talk to your doctor. Thank you.

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