In October of 2021, I was diagnosed with Autism Spectrum Disorder (ASD). I am not one to keep quiet about mental health or other stigmas, so I have already shared my diagnosis with most people in my surroundings. However, one thing that really bothers me is that a lot of people tend to think getting a diagnosis is really easy, and that everyone has “a label” nowadays. This is something that I would like to counteract, so in this post I will be sharing the process I went through to get my diagnosis. I also hope this will offer insight for those who might be considering going into a diagnostic process.
In order to give you a better picture of what the process was like, I have included dates with every step that I took. I even went back into last year’s diary to look these up. I am sure this will show you that it is in fact not at all easy to get a diagnosis and it takes a lot of patience and perseverance. However, I also want to reiterate that getting a diagnosis can be absolutely worth it and help you a long way. I don’t want anyone to feel discouraged to take on that journey, because for me it was worth every bit of time and energy that went into it.
The process of getting an ASD diagnosis
First, I need to point out that the process of getting a diagnosis can be different for everyone. What I’m describing here is my particular experience, in a country where I have fairly good access to mental healthcare, and in a city with plenty facilities. This process may not only differ from country to country, but also from city to city, practice to practice, and person to person.
Here’s how it went for me.
1. Referral – March 2021
The first thing I did was see my GP to get a referral. I spoke to them about my concerns and they asked me about my symptoms and family history. Autism is very much a genetic condition, so they wanted to know if I had any other family members with ASD. I explained that it is not uncommon for autism to go unrecognised in women and that it makes sense there has been no diagnosis in my family so far, simply because autism was only discovered in the 1940s. I was lucky enough that my GP seemed to have a bit of knowledge about it, and they also knew the right place to refer me to, which was a practice that specialises in autism (Dokter Bosman).
2. Questionnaires – April 2021
I was quickly registered with the Dokter Bosman practice and sent online questionnaires. I had to fill out all sorts of information about my medical history, especially my mental health record, and answer multiple choice questions. For most people these questionnaires should be fairly straightforward and quick to do, but because I have been in and out of therapy for over ten years, it took me 1.5 hours to complete them. I had to give them every diagnosis I ever had and any other information I’d gotten from previous psychologists.
3. Screening – April 2021
After completing the questionnaires, I was able to book a telephone screening with a psychologist. They rang me and asked me all sorts of questions about my symptoms and, again, medical history. I was already reading up a lot about autism (in women, specifically) and I also had a lot of help from my best friend Lauren, who had been diagnosed years earlier. This helped me shape a clear story for the screening. At this point, I was already told that my journey did not sound unfamiliar to them and it was indeed likely that I had autism. That felt very good to hear.
4. Intake – July 2021
The waitlist for this practice was supposed to be about four months, but they had just taken on some new employees, which meant I was able to come in for my intake a bit sooner. This was my first appointment with a psychologist on location. Their aim was to see what my personal goal was and if they could help me. I was actually taken aback a little at the start of this appointment, because I was immediately told that I showed some very clear signs of autism. At this point I thought so too, but no one else had ever told me before, especially not a professional. They confirmed they thought their practice would be the right place for me and we would start the examination process soon.
5. Anamnesis (examination) – September 2021
A patient’s account of their medical history.Source: Lexico
Due to the summer holidays, it took a little longer to plan a follow-up appointment. I was given a date in September where we would go into anamnesis, which is basically an examination.
The anamnesis consisted of two parts: one in which we would be discussing my development as a child, and one to discuss my issues in current-day life. For the first part, we invited my sister to fill out any details that I might have forgotten. They asked a lot of questions about me as a baby and toddler, so obviously I would have struggled to answer these questions for myself. For the second part, Lauren joined us to talk about what symptoms she recognised in me. Usually they ask someone close to you who knows what you’re like in everyday life, like a partner or a family member.
In total, these appointments took about 3.5 hours, but we didn’t manage to get through all of it, so I had to schedule a follow-up appointment with the psychologist. I had so many symptoms to talk about that we simply ran out of time. Also, the psychologist later said I got lost in detail a lot during the anamnesis, which is another sign of autism.
6. Diagnosis – October 2021
On the twelfth of October, 2021, I was given my diagnosis. This was another appointment on location, where the psychologist who ran my anamnesis basically read all the symptoms I’d told her about back to me, and stated Autism Spectrum Disorder. She explained a little how my symptoms fit the bill, and she introduced me to the therapist who would be continuing treatment with me. The diagnosis was a huge relief for me. Somewhere inside I’d still been a little nervous that it was all in my head, so hearing a professional say it out loud meant a lot to me.
What happens next
After my diagnosis, I started psychoeducation to learn more about autism and what it means for me. We are mapping out my strengths and weaknesses within the context of ASD, and I am learning to adjust my lifestyle and ask for help. A lot of it is also focussed on processing the diagnosis, as I’ve lived an entire life not knowing what was going on with me, which has had a major emotional impact. This part may differ from person to person, though, as everybody has different needs.
I am also part of a therapy group for women with autism where we get to exchange tips and experiences.
Questions from followers
I asked my followers on Instagram if they had any questions on this topic. I will do my best to give concise answers here, but I aim to write more posts to examine these questions further because they’re so good!
What encouraged you to get tested?
Long story short: towards the end of my trauma treatment I noticed I was doing better mentally, but still struggling with a lot of cognitive tasks. I was also dealing with a very heavy burn-out (also know as autistic burn-out), so I realised things needed to change for me and that I might need different facilities/support/alterations at work in the future. I knew getting a diagnosis would help with that.
Where did you get tested?
At the Dokter Bosman practice in Utrecht, who specialise in autism and other disorders. They are also known as the autism knowledge centre (🇳🇱 Autisme Kenniscentrum).
Is having a diagnosis helpful to you?
Yes, it is! Besides getting to know myself better and learning about my own limitations, I now also have better access to extra support and facilities I may need. I would love to write a follow-up post about this sometime, because there is much to be said about the advantages of a diagnosis.
Would you have liked to have gotten a diagnosis earlier? Do you think you should have gotten a diagnosis sooner?
I definitely think I should have, but I am not sure if it would have been realistic because the circumstances were quite complex. Autism also often goes unrecognised in women, so a part of me feels like we need to dismantle the patriarchy before women will get the care they need and deserve (reading tip: Invisible Women by Caroline Criado Perez/🇳🇱 Onzichtbare Vrouwen).
I mentioned before that I am still processing my diagnosis. At the moment, part of my pain comes from having been misunderstood by the world and by myself for so long, and also knowing now that I didn’t get the care I needed for so long. This is something I am not ready to talk about yet, but I think a lack of diagnosis can be a serious form of neglect for children, especially those with undiagnosed autism. So in order to answer the question: yes, I think I should have gotten a diagnosis earlier, but I honestly can’t picture what my life would have been like if I had.
Do you think either adhering or not adhering to stereotypes around autism has in any way influenced the diagnostic process for you?
One of the reasons why I was diagnosed so late, is because I don’t fit most of the autism stereotypes. These stereotypes are often based on autism in white cis men (think Sheldon Cooper), which I am obviously not.
I think this is an interesting question that I would like to write more about. I can say for now that I was privileged to find very understanding people during the process. I also had a lot of help from Lauren, who had gone through this battle before and was able to use her own experiences to help me.
Information for you
If you would like to know more about autism or suspect you or someone you know might have ASD, here are some sources that helped me out. I did mostly consume information about autism in women, and some Dutch sources, because that was what was most relevant to me.
- 📖 I Think I Might Be Autistic by Cynthia Kim
- 📖 Camouflage: The Hidden Lives of Autistic Women by Sarah Bargiela
- 📺 What Women With Autism Want You To Know
- 📺 Misunderstandings About AUTISM
- 📺 Autism in Females: How is it Different?
- 📱 Instagram: The Autistic Life
- 🇳🇱 📺 Mijn vriendin heeft AUTISME
- 🇳🇱 📖 Zondagskind & Zondagsleven van Judith Visser
- 🇳🇱 📖 Desnoods De Hele Wereld van Eva Louise Bakker
- 🇳🇱 📱 Instagram: NeuroElfje
A last note from me
Lastly, I want to end with some important notes.
- My autism diagnosis and what it means to me is not open to discussion. I do not owe anyone an explanation about (my) autism and do not feel comfortable being asked to educate. I am currently still processing this diagnosis myself, so it takes too much energy for me to go around giving Ted Talks.
- I get to choose when, where and how much I share about my autism diagnosis. I am open to answering questions and having conversations with people who are questioning themselves, but please always ask up front if I have space for it.
- Personally, I consider my autism a disability (which is not the case for everyone) and I expect people to listen when I set boundaries.
If you have any questions or comments, you may write them down below or send me a message on Instagram.