suzefricker@mylifeaccordingtome.org Available all the time, just send me an email and I will get back to you.

The Elephant in the Room

Firstly this saying has just been explained to me. It means that there is something there that people are trying to avoid talking about. For my entire life, people would say this to me and I would say where is the elephant. I would even start looking for one. People thought I was being funny but I just didn’t understand what they were talking about. I honestly could not understand why the elephant would be in a flat in London.

So the elephant that I want to talk to you today about is the fact that we have a large number of women today who get either partial (like me) diagnosis of Autism or full diagnosis of autism in their adult life.

Those who are lucky enough to get the full diagnosis are better placed than people like me because you do not have to explain why you only have a partial diagnosis. Support can be easier to get and you do not have to jump through as many hoops as I do. I literally have to take my diagnosis report with me everywhere just to highlight the section on the report that says “In my clinical opinion Suze is highly likely to be on the spectrum but without the early year’s information we can not say for sure.” That sentence is the only reason I got any help because the person who did the testing also said she would benefit from the support afforded to someone with a full diagnosis.

But here is where we get to the elephant. The support for an adult with a full or partial diagnosis is limited. Even to the point that there are organizations who provide assistance dogs to autistic children but not adults. The support you get is limited depending on where you go in the country for adults and some even charge. This is great except for people like myself who is unable to afford it as I want to work. I am a disabled person WHO WANTS TO WORK and because of this, I am unable to get the support I need. I am even disbarred from some benefits because I want to work so can’t claim incapacity benefit or housing benefit.

Is it my fault I was born in a decade where it was considered that girls could not be autistic? No, it is not. Why have they not changed the process for diagnosis where they can say a partial diagnosis of autism? Women who get diagnosed as adults may find themselves being unable to provide the early year’s information. Again, why has it not been changed so that those of us who do have living relatives but can’t trust them to be honest for whatever reason be given the questions they need to find out and ask them themselves.

I have found out the following;

  1. I was 3-4 week premature
  2. No complications during my  birth
  3. I was a very small baby
  4. I was unable to be breastfed
  5. I had issues learning my left from my right
  6. I had issues learning to tie my shoelaces.
  7. I learnt to walk faster than my siblings because I didn’t bum shuffle
  8. my reading was delayed growing up

When I asked if I could give this information to the psycologist I was accused of trying to manipulate the results.

More needs to be done to support those of us from the forgotten generation. We should stop letting ourselves be out of sight out of mind. It is unfair that we do not have the support and I mean proper support.

Just moving into my own place it took me 3 months to figure out what I needed to do in regards to setting up council tax because I was getting confused. I had no help. It got to the point that I had to call the council in tears. Tell them I was autistic and that I needed help to understand what I needed to do before anyone was able to help me.

Seriously this is the world we live in.

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