Firstly, I would like to apologise for not posting last week. My mind was all over the place and I couldn’t keep myself focused. These things happen, and slowly I am learning how to work my way through them. Secondly, I would like to take a different approach to this blog post. I want to write a letter to my past self. This might sound like the kind of homework you’d get after a therapy session, but it’s something that has been going through my mind these past few days.
Dear Ciaran,
You just got your diagnosis of Autistic Spectrum Disorder. That’s a lot to take in. I figured that I would add to the confusion and share with you the things I have learned over the past few years.
The biggest thing to understand is that you are not alone. It might feel like it, especially since getting support through the pandemic (oh yeah, there will be a pandemic) will put a strain on resources. However, there are people out there who understand what you are experiencing. You’d be amazed at the number of people close to you who have gone through the same thing and will offer support if you reach out of it. It may seem overwhelming, but there are people who are there for you.
There will be confusion and frustration. This will come from a variety of sources. With the lack of support (due to the pandemic) you’ll spend a lot of time researching on the internet. You’ll find yourself getting very angry, because you feel as though you need to hit every aspect of the various topics you read about. Trust me, that isn’t the case. Every person on the spectrum has a different experience. Trying to fit into every box will only lead to depression and anger. You should also not disregard topics because you think they don’t apply to you, or they don’t seem to fit under the ASD label. ASD often overlaps with other conditions, a great example is ADHD. There will be a lot of information from non-autistic sources that will still be useful and productive to you.
There will be a lot of new words to learn. Neurotypical and Neurodiverse were not even in my vocabulary until I started to research autism. The spectrum is also developing, so phrases and acronyms will change (for example Asperger’s is now no longer a formal diagnosis, with High Functioning Autism replacing it). Within the spectrum itself, there is also a huge discussion about which are the best phrases and words to use. You will get confused. I am still confused. The best advice I can offer is that you should concentrate on understanding yourself first and foremost. Don’t get bogged down with terminology. Understanding yourself will make it much easier to decide which words you prefer to use. For example, many people on the spectrum prefer the phrase Autistic Spectrum Condition than the traditional Autistic Spectrum Disorder. You don’t have to take a side, concentrate on what autism means to you.
Understanding your special interests will be quite important. Especially since autism will become a special interest to you. Special interests come in many forms. For you, linking your autism to previous experiences and conditions will become a core focus. You will find yourself trying to understand how autism impacted your earlier life. This can be useful, but it can also lead to anger as you try to apply a layer of logic to things that, by nature, don’t have logic. Try not to dwell on previous experiences that now seem to be autism related. Don’t rake through the past, learn from it when it comes up, but concentrate on the now and how you can identify things going forward. This will be much more productive than being deep in the past where you can’t change the things that happened.
Know that there will be many pitfalls along the way. Don’t blame yourself for falling into them or not identifying them earlier. The most important thing for you is to learn from them and try to figure out how you can identify them in future. Acceptance is also key. Accepting that there will be mistakes and learning not to blame yourself will end up being much more productive in the long run.
Don’t worry, you’ll get through this. You’ll be stronger for it. Your diagnosis is just the start.
Ciaran (circa 2022)
I realise that the wording of this letter may be poor in places. That is mainly because I am still trying to figure out a lot of the things myself. I am starting to realise that I have a long way to go before I understand and accept my diagnosis. The last few years haven’t been easy, I find many things a challenge. There are still days that struggle to keep on top of basic things. Understanding them is not easy. I do know things will become easier over time. Partly because awareness of autism is improving considerably, and also because my understanding of autism is developing over time, but mainly because I have found friends who can help to guide me.
If you could offer advice to yourself after a diagnosis, what would you say? What would you want to hear? Feel free to post your information in the comments.
Not Broken 