I want to tell you the story of how I got my diagnosis for Autism Spectrum Disorder.
My story, although lifelong, begins in june 2011. A traumatic event befalls my family and from one day to the next I find myself in a place that I never thought possible. Trying to deal with the situation as best as possible, I am in survival mode the first few months until I collapse. The first depression arrives and I am haunted by nightmares and flashbacks. I quit my bachelor education and debts are slowly building up as I am unemployed.
The small group of friends that I have are incapable of comforting me and helping me “get over it”. They too slowly retract from my life.
“…it was thought by my psychologist and his team that I might have Bipolar Disorder, probably Borderline Personality disorder and definitely Post-Traumatic Stress Disorder.”
As time progresses my body has more and more physical ailments that the General Practitioner can’t pinpoint through medical examinations. I continue on this defestating path of mental defeat and physical exhaustion until 2015, when I finally ask my GP to refer me to a psychologist.
After a waiting period of 3 months, I am finally invited for an intake with the psychologist. My case is accepted and I am getting weekly appointments. Pretty soon it was thought by my psychologist and his team that I might have Bipolar Disorder, probably Borderline Personality disorder and definitely Post-Traumatic Stress Disorder.
I was asked to keep a Life-Chart to see my daily progress in moods of depression and possible mania’s or hypomania’s.
In regards to the BPD I was insulted and didn’t relate to the condition. Although I made this clear, the psychologist didn’t change his mind on this, neither did he research it properly with me. Being who I am, I started researching all these diagnosis myself. The more I read about them, the less I felt that BD and BPD were befitting me. I did recognise myself in all the aspects of Complex PTSD.
After a one and a half year I tried to explain my psychologist how I felt about the diagnosis and that I felt I needed a reevaluation, because I felt that something else was going on.
“The test was clear: Autism and PTSD.”
The deeper I delved into the rabbit hole, the more knowledgeable I became about the diagnosis I was given. They just didn’t seem to fit. As if I was given the wrong size of clothing and it didn’t fit. I just didn’t know what it was that something else, that I felt was the problem. Then one day I stumbled upon an American website that allowed for extensive testing on various psychological problems, using authentic testing forms. The test was clear: Autism and PTSD.
I didn’t know to much about autism and so I started researching the symptoms and traits. I didn’t recognise myself in it at first but then I started looking for the details of autism in woman. A world of knowledge opened up to me and for the first time in my life I could finally name all my problems under one single term. Autism.
With this newly found information and extracts from the web I went to tell my psychologist and told him that I felt this was it. He almost immediately dismissed my ideas with a single phrase: “You are way to communicative to be autistic!” I felt heartbroken and lost by his reaction. In the following months it became clear that the Cognitive Behavioral Therapy had no effect on me. It allowed me to demand a proper psychological assessment to find out what was really wrong with me. Although my psychologist wasn’t enthousiastic about this, he did agree with me and signed me up for the assessment.
In 2017 I went in for testing and my oh my what a hassle this turned out to be. The psychologist was in training and presumptuous about me in many ways. She was denigrating in her communication. Didn’t take my answers serious and when I didn’t understand a question she just told me what the answer should be according to her. The whole process started to become traumatizing and I started to have regular meltdown’s.
It became so stressful that I eventually withdrew from continuing the assessment, leaving the ASD evaluation incomplete.
“There was however enough information for the psychologists to come up with a new diagnosis: Schizotypal Personality Disorder.”
I was furious when I read the evaluation paper. This wasn’t me! This was exactly all the answers she provided for me!
“Dear, you are far too interactive to have autism!”
Based on this new information it was thought best to refer me to another psychological expertise centre for PTSD and so I was placed on the waiting list. About 6 months later I had an intake. It took this psychologist only 30 minutes and already she dismissed my PTSD diagnoses because I didn’t have any recurring nightmares anymore.
When I asked her if I could be tested for ASD, because the previous test was incomplete. She literally looked at me and started laughing while saying: “Dear, you are far too interactive to have autism!” It was degrading and painful. Due to my newly received personality disorder, she thought it best to refer me to yet another institution specialised in just that, personality disorders. And so I was sent yet again to another place for help.
The everlasting waiting lists! After another 6 months I was finally invited for an intake at the personality disorder specialist. Without hesitation I immediately requested to be tested for ASD because the previous assessment was done faulty and incomplete.
I did manage to get my AQ testing from that time and the score was 37, which means I fall in the spectrum and are most likely Asperger, the old DSM 4 term which has been replaced with the more general name of ASD in the DSM 5.
She looked at my records and agreed that I should receive a proper testing on ASD. The relief I felt when she agreed with me was immense. Finally someone who was willing to help me. I was placed on a waiting list for the assessment and in february 2019 I was invited to participate.
The whole process of getting assessed for Autism took 2 months in which the assessor used several screening tools. The AQ test I had already done in 2017. A TAT screening, this is where they show you a bunch of pictures and ask you to describe them by answering a few questions. A DSM 5 interview with me and a hetero-anamnese with my mother. They also assessed my personality with questionnaires. Finally in April 2019 I was informed of the results: You have Autism!
The relieve I felt to be finally recognised has few words to begin describing its sensation. Tears of joy and sadness flowed simultaneously.
Being autistic made this institution refer me to the Autsim Specialist in my hometown. I am, as you can probably guess, on the waiting list. In the months of waiting I have read many books on the subject of autism. I started a blog (Gewoon Autastisch!) to tell my story and share my experiences about my life with autism. For the first time in my life I have a tribe of people that I can connect with in this global online network of autistic people. Although I still struggle from day to day, I am slowly feeling more and more at home with myself.
What I’ve learned from this experience:
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Do your own research about your (possible) diagnosis;
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If it doesn’t feel right, It probably isn’t right;
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When they tell you no: Don’t give up!;
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Patience and persistence are true virtues;
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Being a woman and person of color makes it less likely for a psychologist to recognise ASD traits within you: don’t give up!;
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ASD cannot be assessed in a regular conversation. A proper assessment takes several tests and interviews. Don’t accept a single sentence to dismiss your possible autism!;
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You have a right to receive a proper diagnosis.
I understand that getting a diagnosis is easier in the Netherlands because of our medical health care system. It is more difficult to be diagnosed in countries like America or United Kingdom, and even worse in developmental countries.
In spite of the difficulties, if you are able to get a diagnosis, please do it! It is first and foremost a ticket to self-understanding and self-acceptance. It is also a tool of leverage for social change. When a minority becomes a majority it will become impossible for politicians and healthcare professionals to ignore our needs. We can demand better care and laws and by doing so we make it possible for the next generations to life better lives.
