Communication and Me Updated Version for Autistics Speaking Day 2014

Today is Autistics Speaking Day.  It was started a few years ago to counter the Communication Shutdown day where people were asked to give up Facebook and Twitter for the day to see what it is like to be an autistic struggling to communicate. 

Those are actually some of the easier ways for us to communicate.  It involves typing and not face to face interaction.  I also don’t think they thought about the fact that communication is more than just typing and/or talking, many behaviours are communication.  Not using Facebook or Twitter are not going to let you know our struggles with communication.

I have a significant amount of trouble with verbal communication.  It is an area that is very hard for me.  It’s not that I don’t want to speak:  I can’t. 

My communication challenges are made worse by sensory overload and anxiety.  When these come into play, communication problems make the anxiety worse.  It goes around in a circle!

Some autistic people compare trying to understand a conversation with trying to understand a different language. I can’t properly gauge what emotion people are showing on their face or through the tone of their voice and I can’t always tell if people are joking.  Some of us have trouble understanding gestures, facial expressions, and tone of voice.  Some of us are very literal and have trouble knowing how to initiate, maintain, and end a conversation.  There is also the problem of what to talk about. 

Autistic people can be highly verbal but our words may get stuck.  This can happen in any environment-home, school, and work.

Home

At home, it is difficult for me to initiate and have novel conversations with my husband and daughter.  At least with all three of us on the autism spectrum we have similar problems, although expressed differently.  I avoid answering the phone unless it is someone I know and I feel able to talk at that time.  Sometimes I have to force myself to answer phone calls from professionals.  I also struggle with making calls and many times put them off until the last minute.  In both cases, I don’t know what to say and even if I do know what to say or I have a script, it comes out jumbled up and there can be misunderstandings.

Even with my husband and daughter, things come out wrong or I don’t know what to say.  It is easier with my daughter because we both like horses and she likes to talk a lot about them.  Since I like them too, I can keep up!  Of course now she is into Marvel superheroes and is sending me a fact a day because I am not up on all of it.

Professionals

I have a psychiatrist who actually talks with you and doesn’t just ask how you are and send you on your way with your prescription.  I appreciate that, but still, I don’t know what to say or how to say what I do want to communicate to him.  I have many things to talk to him about but I just can’t seem put it into words.  I should probably get up the courage to start writing things down and passing him the note but I haven’t yet.  Not that I should even have to worry about things like that but that is the way the world is still.

With the family doctor, the main problem is calling to make the appointment in the first place.  Sometimes, there are things that are hard to explain and I can’t get the point across and so my problem gets glossed over like it isn’t a real problem.   In this case, I’m not sure that writing it down for the doctor would work.

I have the same issue with the dental hygienist not listening.  My daughter needed an x-ray and told the hygienist that the film hurt her mouth.  She has problems with the tooth x-rays because the film makes her gag.  The dentist usually comes in to do it because he knows exactly what to tell her.  The hygienist kept trying and told Micah that it didn’t hurt, which I didn’t agree with.  I told the hygienist that it hurt me and Micah has sensory problems and it does hurt her also.  I didn’t have the verbal ability to ‘get into it’ with her and the x-ray didn’t happen.  I told my husband about it and our torturous cleanings (our usual hygienist didn’t do our cleanings) so he emailed the dentist who said he would go back to cleaning our teeth himself.

Educators/Teachers

Teachers have an abundance of power (at least some think they do) over people with disabilities.  It is important that parents know the laws and requirements of special education.  As a parent, I know what they are required to do.  However, because of my communication difficulties, I cannot make my knowledge known to those in charge of teaching/helping my daughter, and so they think they can push us around.  This has happened in previous schools. I may not be able to get my point across to them or defend myself verbally but I always find a way:  I can do it through email or through my autism consultant who, after talking to me, knows what I want to say.  This way, she can talk to the teachers, principals, and Special Education Resource Teachers (SERT) on my behalf.  She helps them understand what I want for my daughter so that school goes better for her than it did for my husband and me.

Relatives

I struggle with initiating conversations even with my extended family and in-laws.  I have four siblings.  I grew up with my slightly younger sister and although we lived in the same house until she left home when I was about 18, I still have trouble initiating and maintaining a conversation with her!  At family gatherings on either side of the family, I usually just sit back and observe or attend to Micah if needed.  I can answer a question but I don’t go into detail unless it is something I know a lot about and the words don’t get stuck.  My side of the family, when all the aunts, uncles, and cousins are together, likes to loudly ‘debate’, especially at the dinner table.  I just sit even, if I have an opinion because if I put my opinion out there, I won’t be able to defend it.

My communication difficulties are made worse by the sensory overload from the loud noises, smells, and being in new situations.

If people take the time to really get to know me and they understand autism, they may be able to get a sense of how I would like to respond.  When I am comfortable with someone, I am able to tell them if what they think I want to say is right or wrong.  I can’t always just tell them what I want though.

I had an autism consultant who helped me for several years.  She was not on the autism spectrum and did not have a child on the spectrum but she was good at knowing what was going through my mind and she was able to put it into words for me.  My current autism consultant can do that too.  They always consulted me and ensured it was correct

I don’t know if I will ever be able to communicate any better than I do now.  It can be very frustrating but that is the way I am.  Since all behaviour is communication, I need a translator!  The only problem with that is I hide many of my stims and SIBS.  I also can’t always get what is in my mind.  out in any form.  If I can't get it out right away, there is a chance it will come out another time.

Just because we don't communicate in typical ways, does not mean we don't communicate.  Don't take our ways of communicating away from us.