Saturday, 31 March 2012

My Diagnosis: Part 1

My diagnosis came about nine months after Micah’s.  As we learned more about autism, my husband and I realized that I had many of the characteristics so I saw a psychiatrist (because he was covered by OHIP) who has experience in diagnosing autism spectrum disorders.

As a kid, I never had a close friend to share things with.  I had some friends but was never totally comfortable around anybody including family.  At school I played with the boys a lot because they played more running games and the girls that I played with played ball games against the school walls.  I never got into playing marbles, baseball, or any games like that because I never knew the rules about how to play properly.  Everybody just seemed to know what they were doing.  Asperger's can be harder to spot in girls because many of us either hang back and keep quiet or are great imitators thus people have no idea we don't know what to say or do.  Many girls with asperger's also have more "acceptable" obsessions like horses or people, so we don't stand out as much as people who have obsessions with toilets or windshield wipers.  The problem with an obsession with people is that it can come across as stalking if it is not hidden and people find out about it.

Me on the left looking very unhappy!
I hated vacations because they were a big change in routine.  Going on trips crammed into the car with smoking parents and driving for hours to somewhere I really didn’t want to be was not my idea of fun.   I hated school breaks, especially summer break because my routine was broken and I never saw my school friends.  

I got made fun of for the way I wore my hair in braids, not the style at the time!  I also listened to the same radio station as my parents, not the current music that other kids did.  I was basically a little adult. Kids threatened to beat me up, but it never happened.
I have constantly worried about everything for as long as I can remember.  I remember being in daycare when I was probably five and there was a fire alarm so we had to leave.  I was worried about coats for my sister and me.  I am not sure why I worried about it, except maybe because we were supposed to wear them outside and a fire could destroy them.  

I once had a friend come with us on our boat for the weekend, but I ended up hating it.  I now know that I need space for myself and cannot be around people for that long having to do things with them and talk to them.  It was hard to know what to say and do for a whole weekend.  I couldn't just go off by myself and read a book.

My mother told me the basics about getting my period and when I got it, I had nobody to talk to because I had no close friends like other girls my age and was not close with my mother.  I was well past needing to wear a bra when my mother finally told me I needed to wear one. Things like that never occurred to me.  It was very uncomfortable at first because I had no practice.  I now know that girls with autism should practice things like wearing pads and bras before you actually need them because of our sensory problems.  I learned about shaving my legs and underarms when I overheard kids making fun of another girl who did not do that, so I got up the courage to ask my mother about doing it. 
Most people wish they could go back to being a kid but I don’t.  I hated it!  I can’t think of many good memories.

Saturday, 24 March 2012


Our daughter had many early signs of autism but they were looked at individually and nobody mentioned autism to us.  We were first referred for early intervention because she wasn’t babbling and she ran her face along the floor but we didn't know until she was older that she should have imitated our facial expressions, waved bye, or played patty cake.  We had several hearing tests done when she was young because she didn’t seem to hear us. 
We were provided with a consultant OT (occupational therapist), who dealt with her sensory problems.  She had low sensitivity in her face and mouth so we used vibrating toys and toothbrushes to help with that.  We were taught exercises to do on an exercise ball to help with her coordination, balance, and muscle tone.  When she was a young baby we had to bounce our daughter hard in our lap and even as she got older she needed to bounce and jump a lot.  We were told to take many parenting classes, and also took the Hanen Program to improve her communication.  She spoke single words and she would say a word once and then never again. 

Jumping at kindergym!
Our daughter had many tantrums that lasted a long time.  They could last an hour or more and she could (and still does) become very aggressive.  I took her to many toddler and preschool programs.  She wouldn’t even play alongside the other kids; she had no interest in them.  She would hide under the slide at kindergym and didn’t want any other kids near the toys she was playing with.  The professionals told us that she had behavioral problems; it was my fault (we later found out about "refrigerator mothers"), and to take more parenting classes. 
We kept trying different professionals, psychiatrists and doctors.  Nobody could tell us what was wrong.  We finally found a doctor when she four and a half who could tell us.  She was diagnosed with autism spectrum disorder.  She was referred to a psychiatrist who specializes in ASD and he did assessments and diagnosed her with autism when she was 5.

If you feel there is something that doesn’t seem right with the way your child is developing, keep after the doctors.  She had other health problems that we had to fight to get solved along the way also but that is another story.

Once she was diagnosed, we got her on the IBI waitlist, started going to parent support groups and got a consultant at Kerry’s Place.  She is smart and a quick learner so once she figured out she needed to use more than one word, sentences came quickly.  IBI started when she was 7 and in grade 3 and that is when she learned to have a proper conversation (one that wasn’t one sided and just about her obsession!).   To receive government funded IBI, the child must be toward the severe end of the spectrum.  While IBI is best started when the child is as young as possible, individuals of any age can be taught and can learn.  The Ontario government originally only funded up to the age of 6, but a year or 2 before Micah started, that was changed to include all children who qualify.

Our daughter is an advanced learner and we chose to use a senior therapist who knew verbal behaviour  (VB).  Since Micah is an advanced learner,  we used a lot of natural environment teaching (NET).  Here are some clips from her team supervision  meeting.  She is being tested on asking questions, telling a story, and component to composite tacting ie the brown wallet is jumping on the floor.  She has a strong need to be in control so sometimes we allowed her to do the teaching to show what she knew.

Wednesday, 21 March 2012

A Bit About Me

I am a 41-year-old mother with Asperger's syndrome and my husband also has Asperger’s syndrome.  Together we have a daughter with autism.  We knew our daughter was different from the time she was born.  She had many sensory problems.  It took us until she was 4 1/2 to get her diagnosed.  In the meantime, we were labeled bad parents and told to take more parenting classes.  With what I know now, she should have easily been diagnosed younger.  To help her and learn more, I took a course called Autism and Behavioural Sciences Graduate Certificate through Seneca College online.
We discovered my Asperger's syndrome after my daughter was diagnosed with autism.  My husband was diagnosed six years later.  We never have a dull day in our family!

In addition to the three people, we have several pets. We have two dogs, two cats, three birds, a bearded dragon, a russian tortoise, and a few fish. My daughter and I also like to ride horses, but we don't own one. We both ride as para-equestrians. We have our classification card and can use special aids, if we decide to show dressage. I recently competed in the Sea-To-Sea video competition.