a long way to the right diagnosis

During my work as a business assistant, I began to have more and more problems. I had troubles to sleep, physical complaints (headaches, my neck was hurting, aching joints,…) So I went to a family doctor. He did several clinical examinations but there was nothing wrong. Every time he said that if I had something I wanted to talk about I could do that. So one day I began to talk about some of the problems I was having. He prescribed some sleeping pills, sedatives and antidepressants, and he started weekly sessions of psychotherapy with me. The result of all this was that I didn’t sleep better, I felt more anxious, and sometimes I felt asleep at the office.
After 4 months with these medications and the sessions, I was very depressed. And one normal workday I was so depressed and upset, that I had a huge breakdown at the office. I nearly attempted at my life. One of my colleagues stopped me. At work, they were in a bit of a panic and my boss phoned to my family doctor.
The doctor admitted me at the 24-hour emergency service A week later I was back at work, and I stayed a few days at a colleague’s house.
My parents didn’t know what had happened to me. My mother had lost her father a few months earlier, and she was spending a lot of time taking care of her mother, who was sick. I didn’t want to annoy them with my problems.
It was only a few days later that this family doctor contacted my parents. They had a long conversation together. He told my parents that I was really fragile and that I had to reconstruct my personality by taking some distance from my parents. My mother talked about my childhood and asked him if during those 4 months of therapy he hadn’t noticed any autistic traits. He clearly said NO!

Two weeks later I was admitted in a psychiatric department. This was the first admission of a long serie of other admissions. In all those institutions, autism isn’t known and so can’t be recognised. Not even after my parents told their doubt about me. During all these years of psychiatry I never felt good, I wasn’t myself anymore, I couldn’t think for my own anymore, I was given a lot of medication. I never felt understood. Once again I felt lonely. Everything that my parents had constructed with me was broken. 

After 7 years of not being understood, and several wrong diagnosis, wrong medication and wrong therapy, my parents and I decided that it was time to test for autism. At first, the psychiatrist of the last department where I was admitted said that it was a waste of time and energy to do other tests, to consult another psychiatrist. She said they were perfectly able to take care of me. I was their patient and they knew what was best for me. Finally, my parents insisted so much that they let me go. I needed their permission to leave because by breaking the rules they could refuse to admit me again in the centre.

My mother had been thinking since I was 3 years old that I might be showing some signs of autism. She asked several times to paediatricians, to psychologues, to psychiatrists if there could be a form of autism. All of them denied this. They all said that everything would be fine with me; I was just not as fast as other children.
So I went for 2 days of tests. In March 2005, we received the result: I clearly have a trouble in the spectrum of autism. 

Finally, there was a name for being different. I wasn’t crazy. It was nobody’s fault.
Today this question stays with me: why have all those doctors and specialists never thought that I could be an autist? Even not when my mother mentioned it.
More than one said to me:” it’s impossible that you’re an autist because you talk”. You are looking so “normal”.
When the psychiatric department where I was admitted learned about my diagnosis, all of them still couldn’t believe it and they said: “oh, what a pity. This has to be so heavy and difficult for you.” Their wrong attitude came probably from their ignorance of autism but it gave me the impression that it was the end of the world.
In fact the diagnosis didn’t change me. I was still the same person. It’s just that now I knew why I was having so many difficulties in my life.
The following weeks I read many books about autism. I wanted to know as much as possible about it, I wanted to understand it better, getting some recognition in the stories of other people with autism. It was so important for me.
I was still living in that institution, so I was getting comments from the staff in the psychiatric department that I had to stop reading all those books, that I should better read a light novel. How could I tell them that this was what I needed, that it was giving me some kind of relief? That this was what I needed, because I felt less lonely with my problems? The things that were explained in the books, stuff they couldn’t explain to me, were so close to what I was living. They didn’t believe it. They only knew about cases of autism with withdrawal syndromes and intellectual deficiency and didn’t know that autism can have several forms. 

For my parents it was a relief when they heard the diagnosis. Finally, what they had been thinking for such a long time was right. What they had been told during all this time, that they were the cause of my problems, was wrong. My parents hoped that with this diagnosis I would get better care, and that the doctors would understand me better. 

I accept now that autism is just a different way of living, a different manner of thinking, and therefore not less worthy than the one of a person without autism.