The Appointment From Hell!

I am currently going through the application process for Developmental
Services Ontario (DSO).

I was told I would qualify because I was grandfathered in through the Passport Program. It is a funding program to help people with developmental disabilities get out into the community. I use mine for my horseback riding lessons.

To complete the application process, my autism consultant and I had to meet with an intake worker from DSO. We were supposed to have two three hour meetings but managed it in one.

The intake worker seemed nice enough but the whole process was long and frustrating. There was question after question in many different areas that someone might need support in, such as cooking or going shopping.

Due to my communication deficits, I had great difficulty answering some of the questions. Sometimes when I was asked a question, I just sat there trying to figure out what I was being asked.  My autism consultant regularly mentioned to the intake worker that autism is a communication disorder and so the intake worker would try to rephrase the question but in actual fact most of time she just repeated what she had already said.  My autism consultant ended up having to rephrase the question for me.

There were times that the intake worker would speak to me like I was a baby, making me feel stupid. I know she was trying, but I don't think she understood enough about autism.  Autistics do not need to be treated like babies who don't understand.  We just need someone to explain things to us in a different way sometimes. It doesn't make us any less intelligent.

I was asked whether I needed support in a certain area, what level of support, and for how long.

Near the end of the appointment, the intake worker started asking about Self Injurious Behaviors (SIB's) and if I needed support in that area.  I didn't understand that I could be supported with that.   Do they support you to do it?

When my anxiety is really bad I do have SIB's.  I may bite my arm or hand hard enough to feel it but not hard enough to break the skin.  Sometimes I hit my head or tug on my hair but not enough to pull it out.

I don't want to injure myself,  just make the bad feelings go away.

My autism consultant and I told the intake person that nobody would really ever see it and so probably not could not support me with it.

I have told my autism consultant sometimes when I am doing badly and at times I have actually had SIB in front of her but it really isn't obvious unless you know exactly how I do it. I am very good at hiding things so it is never noticed.

I was so stressed at the appointment with all of the questioning and the frustration of getting the worker to understand my SIB that I was having SIB while trying to talk to her and it was not noticed. I really could not figure out how they were going to support me with SIB when they couldn't even see it when it was right in front of them.  It is the anxiety that causes it so it is the anxiety that needs to be dealt with.

Once we got through that set of questions, the last bit was short and easy so I was able to calm down a little.

The next step in the application process is that the intake worker has to write up a report based on all the answers I provided.

Now, I wait to find out what, if any supports I will receive from DSO.

The one thing I learned is that the service agencies that are going to be providing help to autistic people really need to learn more about autism. They also need to learn that we are intelligent and do not need to be talked to like babies.

We are adults who may just need things explained a different way.