23 October 2011

another post about autism

Like depression, it seems as though everyone I know is touched by autism in some way.  Either they have children, know children, teach children or are married to someone with autism.
The similarities between depression and autism don't end there though.  Here are some things they have in common:
*also known as labels
*often used as excuses
*often accused of not existing
*neither need a diagnosis to be known

I have been giving this whole 'label' thing a lot of thought lately, in fact I have been hearing and thinking about the whole autism thing lately.  People often say they won't get a diagnosis because they don't want to label a child.  I think this is bullshit personally!  I used to agree but I guess now I have gone and labelled myself (depressed and anxious) and my son (aspy, ASD, autistic) I tend to think that it is less about putting a tag on someone and more about being proactive in parenting/self care.
I also think that people tend to think a diagnosis and label are exclusive.  I didn't need an official diagnosis to know that Beren had autism, I was able to acknowledge that well before a diagnosis came  along and having that diagnosis didn't change him, his label still said BEREN - handle with care!

What did a diagnosis mean to me?  Well, it meant access to services that I couldn't otherwise afford to access.  Because I had taken my kids out of the education system I couldn't access ANY services such as psychologist, occupational or speech pathologist through the education system (don't get me started on discrimination!). I needed to be able to access affordable/free services and to be able to speak to people who would know how to address issues I had with behaviour management and appropriate response on my part.

I didn't need to know if there was something wrong with Beren.  There is nothing wrong with Beren as such, he is a healthy, happy, intelligent and handsome nine year old boy.  Nothing actually changed dramatically with a diagnosis for him really.
However, for me it did.  I could speak with child psychologists about some of Beren's behaviours and find out how to 'manage' them.  Even though it was Beren who saw Dr M on a weekly basis I could give her ideas of what I felt needed to be addressed and she could discuss with him or  play games and role play.

It is also difficult to know when certain behaviour is lack of social awareness or just downright playing dirty!  I for one do not believe that aspy boy (Beren) is totally innocent of deliberate bad behaviour and I don't give into the 'oh it's because he has autism' train of thought!

I am fortunate that Beren is high functioning, this means that with good direction, role modelling and boundaries he will lead a perfectly 'normal' life.  (I know, I used the N word!)  Funny enough, most of these things are used with both my kids anyway, it is just that sometimes Beren needs reminding more often and I have used visuals more than I probably would have if things had been different.  My parenting doesn't change with each child, I struggle as a parent enough without having to separate and alter my thoughts for each child!

Beren has come a loooooong way from multiple daily meltdowns, violence, cruelty and total lack of communication that occurred until he was around five.  These were sheer hell.  I had no idea how to deal with them,I knew what was wrong but fell into the 'label' trap and chose not to acknowledge it.  IF ONLY I HAD DONE SOMETHING EARLIER!  I could have perhaps avoided so much anxiety and stress for both of us by learning how to manage.  But, I didn't and we muddled along and we can't turn back the clock.  I think this is why I am now a strong advocate of getting help early.

Back then, I would avoid situations that could bring on a melt down.  I would never leave him alone with another child because I knew he would deliberately hurt that child just so he could watch the reaction.  I spoke for him because he didn't speak, I gave in to all his whims and fancies to just keep him happy.  During this time his father and I separated and that just added fuel to the fire.  I cringe when I think back at how things were dealt with but I will not tear myself apart over it, what is done is done and we can only move forward.

Being the only parent who really acknowledges an issue and deals with it has been difficult but not impossible.  I try to keep things consistent and if I feel something is really important then I encourage their dad to also practice/enforce what is happening.


This word is probably one of the most often used words in our house LOL  I am no saint  as I am sure you are aware.  I use the words don't, stop, no (and swear) but I try to use the positive as much as I can.  I have taught my kids that there is appropriate and inappropriate ways to do stuff.  Rather than fill them with heaps of words I find  the word 'appropriate' works for many scenarios and they catch on very quickly as to just what is appropriate or not.  
We also have visual reminders around the house, such as 'STOP  THINK  CHOOSE' signs.  
Hand signals are used when I am speaking to someone on the phone or in person, such as STOP- palm facing child, WAIT-index finger raised, NO-index finger side to side.  Not to forget the fact that I do great 'stink eye!' LOL

I read a blog post sent to me yesterday and it was written by a mom of a child with autism.  She was writing about how people often judge behaviour as bad parenting or naughty kids etc.  I didn't like the post as it seemed she was saying that all that happened could be blamed on the diagnosis.  This is wrong in my opinion!  Just because a child has autism doesn't excuse their behaviour.  Before you start throwing things at me I obviously, am speaking from my experience only and a child with severe high needs would be a different kettle of fish!  For me, it just didn't sit right.

One day I was driving and the kids were in the back seat bickering.  Beren turned and hit Nienna and when I pulled him up on it his response was, " I didn't mean it, it is just because of the autism!"  BULLSHIT BOYO!  I promptly pulled over, stopped the car and turned around and said "I never, ever want to hear you say that again.  It is not an excuse for inappropriate behaviour!  You know that violent behaviour is wrong and unacceptable!"   I have to say he has never used that again! LOL

So, how do I deal with issues that arise?  
  • Beren is very tactile and finds head scratches and back rubs soothing.  If I see him getting tetchy and impatient I will suggest we go lay down for a cuddle.  Wrapping a tight blanket around an upset child works for many too.
  • Noise and crowds bother him, I don't force him to go to markets etc as I know he will be miserable and make everyone else suffer.  We do smaller crowds and will continue to work our way up.  Also I discuss that there will be music/crowds/noise before hand.
  • Oral fixation, he loves the feel and taste of food.  Working on recognising that he is full and also that he doesn't have to finish everything or by the same note eat ALL things at once.
  • Communication, teaching him to respond when spoken to and not just ignore and walk away.  Prompting him to initiate conversations and to ask for things he needs instead of doing it for him. 
  • Quiet time, teaching him to acknowledge when he is 'peopled out' and to find something else to do away from others.
  • Using social scene card games and board games to learn social behaviour.
  • Not REACTING as this just inflames a situation.  Using a low, calm and slow voice as well as hand signals to indicate that he needs to slow down, breathe and stop yelling before anything can be addressed.
  • Removing myself from the room if I can't stay calm, taking a breather then returning.
  • Explaining how an action makes someone feel.  ie When xxx happens or you do xxx it makes me feel.............    this is not a guilt trip by any means, it is simply educating because empathy is not high on his list of priorities.
  • Echolalia - don't sweat the small stuff!  Although, when Beren got to the triple figures of telling me he loved me and expecting a response daily I must admit I was getting frayed.  I then explained that it doesn't mean as much if it is just being said all the time and perhaps he could tell himself quietly that he loves me.  I also discovered that he would say it when he forgot what he was going to say, I again said it was ok to say he forgot.  
  • Stimming - oh this shits me big time.  flapping, jumping, jiggling about.  Drives me nuts and sometimes I will ask him to stop or I will get him to go ride his scooter, jump on tramp or tell him to go do it in another room. other times it just takes a hug to stop it.
I am sure there are other things I just can't think of right now but you get the drift.  It ain't all roses but I believe that by reinforcing 'appropriate' behaviour and teaching what is expected does make the journey get easier.  Most aspy kids like to please and Beren is no exception.  If he knows something he has done has made me happy then he will do it more and more.  He likes praise and being acknowledged for good actions so he is often easy to work with.

I am blessed with the two kids I have.  I wouldn't change a thing as they are who they are.  Admittedly I have it easy as Beren isn't severely affected by autism and if I were honest, Nienna is probably low on the spectrum too.  But hey, we are all on it somewhere and I like to think the spectrum is just another rainbow.


Happy Elf Mom said...

This is one of my fave posts and honestly I think you should keep it on your sidebar so that people can read it even when it becomes an older post. Thank you, friend, for saying some things that need to be said about autism. there is nothing wrong with our children but yes they need extra support! :)

Marita said...

'appropriate' and 'acceptable' are used a lot in our house.

I don't mind the stimming so much, as long as it is not hurting anyone else, themselves or property. It calms and soothes in a way many other things do not.

You are so right, nothing wrong with our kids, they are just different.

Samala said...

HI Kelli,
This is a wonderful post, thank you! How you describe what you do in your home to support Beren is pretty much what we do - although I could never leave the room or something/someone would get seriously hurt!and also: social scene card games/board games? Can you give me an example? Appropriate is big in our house too - together with 'gently'.
Thanks for your thoughts on a label - we are lucky in that the girls are 5 and have had access to early intervention for the past 9 months. They go to a weekly 'transition to school' group during term, as well as a speech therapist and an O.T. (about 2-3 sessions per term) and I get parental support from a special educator. Its a wonderful, wonderful set up. But as that will end next year, you're right. It is important to follow through and gain access to funding if possible. Thank you, Samala x