The 4 things I wish I knew before my autism diagnosis at 34.
Any mental health assessment can feel daunting, and before I was going for my autism assessment, I wish I’d had some insight as to what to expect after.
I genuinely didn’t think much of it, I’d been told I had depression and anxiety before, how different could this be? I was wrong.
I didn’t know what I was supposed to feel, I had so many different emotions like relief, anger, I wanted answers to so many different things from my past and I thought a diagnosis would help fix things I found difficult, again very wrong!
No one needs fixing or to change who you truly are after a diagnosis, you just need to embrace your beautiful differences, live life your way and try to let the mask have a long rest!
So, I created a list of a few of the things I experienced after diagnosis and how I dealt with them, hopefully it can help others going through the same.
1. The sense of relief can be overwhelming.
Straight after diagnosis the sense of relief can be overwhelming, you’ve gone all these years (if you were late diagnosed like me) and your life flashes before your eyes and so many things start to make sense. Tons of those ah-ha! moments start popping up like pop-ups on a computer screen, there’s too many for you to be able to focus on even one.
I cried so much my eyes were sore! I wanted to ask my assessor a million questions! My mind was going a hundred miles an hour, but the sheer relief I felt took over.
There could also be a sense of shock, I knew I was autistic, but I had also talked myself out of it many times. Thoughts replaying over and over, the doctor who told me I couldn’t be autistic, purely based on the one fact, that I made eye contact. The fact I have a family, two children that are happy healthy (alive!) and blossoming, surely, I can’t be autistic.
But it’s so underdiagnosed in women with very little awareness, there’s no wonder it’s not considered, and we may question ourselves.
Relief also holds those lovely warm feelings of finally being listened to, validation that you were right, you are different, always have been and it’s such a good thing.
Embrace the relief, try, and ask questions if you can, but set time aside for yourself because it’ll probably take it out of you (eventually). I can remember feeling like a huge weight had been lifted and having this floaty feeling for a while after. It was and still is a comforting feeling, but then the obsession of wanting to learn everything was kicking in after that day, and before you know it you’ve lost ten hours to google search!
2. It doesn’t help with what comes next:
This one isn’t going to apply to everyone, for me personally I seriously struggled with who I always was, things like being able to hold a job down long-term, social struggles, friendship problems, what did it all mean after I got diagnosed?
There was this big build up just before the diagnosis, thoughts like, this is going to make everything okay, you’re going to be able to work, socialise, do things that “normal” people do (I use the term normal very loosely, because I hate it). The truth is you have always been the way you are or done things a certain way or avoided specific things like the plague. It doesn’t fix anything like a magic wand.
A diagnosis can help you access support if you want or need it (again I use this term loosely, because getting financial and mental health support can be like banging your head against a brick wall, depending on where you live and how much money you have). My expectations were over the top and almost dreamy, probably because of the lifelong desperation to fit into society, but that piece of paper doesn’t change who you are.
For those of you who have your diagnosis later in life and are happy and content with who you are and what you’re doing, amazing! I get so happy reading about people’s experiences like that because it gives others (like me) some comfort.
If, however you find yourself in the headspace wondering, so what comes next? Time is firstly what you need, just let the whole thing digest. Process what you can, when you can, if you have someone to talk to, then try and talk to them about your diagnosis and what it means for you.
Start writing thoughts and feelings down about what you want to do next but be kind to yourself. Maybe make small sensible goals in a reasonable timeframe.
For me, I was in a haze for quite some time, years in fact. There was still this big question of who am I? It might sound silly, but as I mentioned before I genuinely thought that piece of paper was going to change me and every aspect of my life but in all the wrong ways.
When you realise it’s not you that has to change, but how you handle things and maybe make personal adjustments to make your life less stressful, is when things tend to get better.
Personally, I began to focus on how things at home could improve. Not to say that things were bad, but I always felt like I had to deal with everything, do everything and not show that I was struggling. I felt bad emotionally I craved alone time or on the odd occasion wanted my own bedroom, or that some days I just did not want to talk or have long conversations. So, me and my husband began learning about autism, once you learn about terms like masking, shut down, social and communication struggles, you find ways to handle them a lot better.
3. It doesn’t give you answers to your past or change your past:
This was a big one for me, If I could compare this to anything, it was almost like going through some of the stages of grief and it lasted a long time.
These negative emotions can be tough to overcome. You might feel anger, hate or resentment to parents or your caregivers from when you were a child.
The horrible feeling of time lost was consuming, overwhelming feelings of grief and loss for the life that could have been so different. Questions like why wasn’t a diagnosis made when you were young? Why didn’t you notice my struggles? Why didn’t you listen to my cries for help? These are all normal emotions that can surface, but it’s what you do with them that matters.
Placing blame is quick and easy, but it doesn’t change anything for you. The more I placed blame the angrier I got, I was ultimately poisoning myself and wasting time and energy on things that didn’t really matter.
You can’t change the past and yes it hurts when I used to think about the struggles the difficult or even dangerous situations, I have been in could have been prevented. I was even on times angry with myself at some of the things I’ve done in my life, to be able cope with that feeling of being different eating me away. At the end of the day a diagnosis can give you the power to change now and what’s to come. Past experiences good or bad have got me to where I am, and I will forever be grateful.
I personally didn’t go down the road of looking for answers from my parents, because I knew I wouldn’t get any (that’s a long story), but if you have family you want to talk to, or maybe you would like answers from your past after diagnosis, or just want to ask family questions, just be open minded and think about:
1. You might not get the answers you want.
2. They might not even know what to say or how to respond.
3. You might not like the answers you get.
If you have a supportive family then I’m pretty sure and hope they will be happy to talk about your diagnosis and support you in any way they can, but I can also see how difficult it could be to open up about it, I still struggle. Do whatever is best for you and whatever you feel comfortable with.
Out of all my family I told my husband, children, and my father. My husband was happy for me, very supportive as were my children.
My father (who I love very much, he’s awesome) just smiled and nodded. Now that could sound super cold to the outside world, but he’s my dad, and to be honest it’s what I kind of expected, there were no questions, no conversation about what I had just told him, just a smile and acknowledgement. If you grew up in a family where personal stuff wasn’t spoken about, you will get what I mean!
I also understand the type of person my father is, he’s from a very different generation, I know he loves me, he supports me and for me that’s enough for me.
4. Your mask may come flying off! (On times)
This (for me) is a nice one to write about, because when that mask has opportunity to come off, it’s the best feeling in the world. There were times when I was on my own where I felt like I could be my true self, but it always felt like Lisa had to hide most of the time.
I didn’t even know what masking was until my assessor described it to me. Masking on the most basic level is when an autistic person hides or suppresses parts of themselves when they’re in environments, situations or with people they feel they can’t be their true self, it’s basically behaving in a way so you can blend or fit in.
There was always this feeling of you have to be like the other people around you, have lots of friends, go out and socialise with them regularly, wear the latest fashion, do your makeup and hair like others. There was always this exhausting pressure to fit in and this horrible stomach churning feeling of not wanting to be found out.
Masking is so draining, and it can get to the point your body just shuts down. The tiredness sets in, and you just want to hide from people. When you’re masking it’s like trying to self-monitor a hundred different things every second.
I came across a comment on Twitter, where someone asked did you become more autistic after diagnosis? At first, I couldn’t get my head around what they were really trying to say, but now I completely understand what they meant.
When you’ve been hiding the person, you truly are for so long, having that diagnosis, as bad as it sounds, gave me almost a permission or the green light to just be me. Now I am not saying that you must have a diagnosis to be yourself, I’m just explaining how it felt for me.
A huge part of masking in my opinion revolved around people pleasing, in the attempt to look and behave like the other mothers around me, or the friends I had at time and pressure from family. So just having some of that pressure begin to lift can make a big difference in you as a person and start lifting some of the expectations that you feel you must meet.
Coming back to the Twitter comment, sorry I divert! No I don’t think you become more autistic after diagnosis, I think you begin the fun and exciting process of not masking so much. Just to have the confidence and reassurance that you don’t have to be like everyone else, you can say no thank you to some social events and if you want to do your hair in a certain way and rarely wear makeup, wear specific clothes and end up buying multiples of them through fear of never finding them again! Or you want odd tattoos (that’s just my list of things I started doing more of) start pleasing yourself a lot more and let your mask have a well-deserved rest!