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Sufferers Stories:

Diane:
Asperger Syndrome  

Gary: Asperger syndrome and OCD 

Luis: OCD, depression , Aspergers syndrome and eye floaters
New e-mails October 2007

Steve: Brontophobia
( fear of thunderstorms) 

Lynda:
Anorexia nervosa, agoraphobia, panic disorder GAD.

Zed:
OCD, Tourettes syndrome, Trichotillomania

Christine:
OCD, depression, social anxiety/AS, GAD, ADD, Hyphochondria.

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Diane is an advocate for Autism. The article below offers an informative personal insight into Asperger syndrome.

An Aspie's View

THE DSM-IV definition of Autism is as follows:

The DSM-IV is a sort of bible used by the mental health profession to figure out how to label people. Autism is a Pervasive Developmental Disorder. Some of the other disorders under the umbrella of PDD are Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder and Pervasive Development Disorder (not otherwise specified). Another thing that some professionals like to do is to just diagnose symptoms and call them disorders. That is your child has anxiety disorder, OCD, ODD, etc. instead just telling you one of the above. The diagnosis process is very hard on the parent. We all know this labelling the symptoms is just confusing.

Let me introduce myself, I am Diane MacNaughton. That is who I am first and foremost. What we always have to keep in mind is that we are people first. The children are the same before and after before and after diagnosis. They didn’t magically change because the doctor gave them a diagnosis. The diagnosis is a tool to get them proper funding to get them the proper help to deal with life. (Life in school, etc.)

A little history about myself, I was first diagnosed with bipolar disorder in 1997, about 6 months after my son Peter was diagnosed with Classic Autism at age 6 in the fall of 1996. I was then diagnosed in July of 2003 with Asperger Disorder. Peter was rediagnosed with Asperger Syndrome in September 2007.

My son Peter has taught me a lot. I started out as a parent who thought I knew exactly what he was thinking when he was non-verbal. I was way off-base. I have since decided that all children are smarter than us parents and should be approached that way. That they have known us all their lives and we have only known them for a short time. For example I have only known Peter 17 and I am 50 so that is only approximately 1/3 of my life.

Peter was non-verbal till about 5 he sort of talked in mostly echolia. Echolia is when the child repeats what we say and we think they are talking, but we can only understand what they are saying. We adults do it too we repeat what it said so that we hear it and can better process what is being said to us.

One day I decided that I would look directly at Peter and speak in short words or sentences. I also decided to tease him, I touched his bum and said “head”, he looked at me like I was “crazy” and said “bum”. It became the classic “Helen Keller” moment and we went around the house naming objects. I think the boy had just been waiting for me to give him a reason to talk. His T.A. in Kindergarten taught him how to read and he spent his time reading in bed, dictionaries by Richard Scarry and Sesame Street and learned our language.

Most children on the ASD are intelligent they just need to be convinced to communicate I think. A lot of the time they have sensory overload to overcome and frankly a lot of normal or neurotypicals (NT’s) are boring. The magical, fantasy world that many of us create is quite enticing. When I am destressing in my room it quite pleasant, listening to music, talking to myself, processing my day, I have been doing this since I was a teenager. It is how I cope. My son has been shutting me out of his room since he has been able to close the door on me, a passion of his, closing doors. I can’t tell you how often I was almost shut into the fridge when he was three, after all a door is a door.

Most autistics (I put everybody on the ASD in here) I think see everyone equal. They find everybody other than their peers less boring probably due to their intelligence. They find younger and older people more fascinating, animals more fascinating. We are into social justice and need to know why and understand. If we have limited language and repeat something it is because we need to know why not because we don’t understand.

The sensory overload is a big deal and we stim to get over it. We rock, or twirl our hair or it you are my son in second grade you chewed through your t-shirts. Hopefully it is nothing too embarrassing, we all seem to pick our noses but hopefully by the we grow up we get out of this phase or actually learn to use a Kleenex. It is because we are trying to distract ourselves from hearing the electricity which is just everywhere now, because we are sensitive to the lights, because we can hear much better than most people and because we are trying not to run screaming from the room. So teaching us not to stim is not the thing to do, teach us how to stim so we don’t get teased or bullied by the other kids. I find putting pressure somewhere on my body helps. I cross my legs at the ankles, which seems to help a lot. Or I slowly rub my thumb over the other one. Or I doodle a little bit. I can listen better, or chewing gum helps me think. Little tricks help me think, and sunglasses help with the lights.

There are always ways to adapt, we do not need to change our “square pegs” to fit into the round holes of society. We need to nourish them to make them grow. We need to tell them what I told my son that we “think outside of the box” so we are the great thinkers in society. That we autistics can lead the world out of its problems that it will be facing in the next few decades. That is the reason so many of autistics being born. Our children are like everybody’s children they are the hope for the future and we have to give them a chance.

Diane MacNaughton

Aspie

Autism Advocate

B.A. Psychology

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