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.

Micah

Our child 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 our child wasn’t babbling and they ran their face along the floor.  We didn't know until they were older that they should have imitated our facial expressions, waved bye, or played patty cake according to 'normative developmental expectations'.   We had several hearing tests done when they were young because they didn’t seem to hear us. 

We were provided with a consultant OT (occupational therapist), who gave us ideas for our child's sensory problems.  Our child had low sensitivity in their 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 their coordination, balance, and muscle tone.  When they were a young baby we had to bounce our child hard in our lap and even as they got older they needed to bounce and jump a lot.  We were told to take many parenting classes, and also took a program to help improve their communication (so many better options now though- IPad with apps etc).  Our child spoke single words and they would say a word once and then never again. 

Jumping at kindergym!

Our child had many what we thought were tantrums that lasted a long time.  They could last an hour or more and they could become very aggressive.  We know now that they were meltdowns from being overwhelmed.  I took them to many toddler and preschool programs.  They wouldn’t play alongside the other kids; our child seem to have no interest in them.  Our child would hide under the slide at Kindergym and didn’t want any other kids near the toys they were playing with.  The professionals told us that they had behavioral problems; that 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 why our child was struggling.  We finally found a doctor when they were four and a half who could tell us.  They were diagnosed autistic.  They were referred to a psychiatrist who specializes in autism and he did assessments and confirmed the diagnosis at age 5.

If you feel there is something that seems different with the way your child is developing, keep after the doctors.  Our child had other health problems that we had to fight to get solved along the way also, but that is another story.

Once they were diagnosed were were told to get them on the IBI waitlist, start going to parent support groups and we got a consultant at Kerry’s Place.  Being 'good' parents, we did as we were told.  But I would have redone a lot- like no IBI (ABA)!  More on that in future blogs as you will see (I am rewriting bits of these). 

A Bit About Me

I am a 41-year-old autistic mother and my husband is also autistic.  Together we have an autistic child.  We knew our child was different from the time they were born.  They had many sensory problems.  It took us until they were 4 1/2 to get them diagnosed.  In the meantime, we were labeled bad parents and told to take more parenting classes.  With what I know now, they should have easily been diagnosed younger.  To help them and learn more, I took a course called Autism and Behavioural Sciences Graduate Certificate through Seneca College online.  I didn't realize at the time that it was mainly a program to fix autistic people and not support them.

We discovered my autism after my child 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 child 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.