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Why Getting My Autism Label Was So Important

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8/18/2018 — a day all about the 8s, and also the day both everything and nothing changed.

It’s a day I feel I need to talk to the world about. A day that defined my experience of life. A day I received validation, and permission to unequivocally be me, rather than the me others see. It’s the day I “became” autistic — or rather, the day I was labeled autistic. It’s funny isn’t it, our preoccupation with labels. I’ve had many a person tell me over the years that children especially shouldn’t be labeled at a young age. I’m here to tell you why I wholeheartedly disagree. I am living proof of what being “unlabeled” or “mislabeled” looks like.

I know some people who know me will think “what the hell is she on about?” and “there’s no way she can be autistic.” I have friends, I understand sarcasm (and use it profusely), I’m married, I have children, and I used to work. But no one sees the inner turmoil that is present whilst all of these things occur. I struggle to maintain friendships — and that is so hard for me to admit. A lot of the time it’s because I’m unable to read between the lines, and because of this, I often need reassurance about my friends caring for me and wanting to see me. When this doesn’t happen, through utter anxiety, I either shut down completely and can’t communicate with them, or my behavior becomes controlling, suffocating even.

And it doesn’t stop there. I’ve struggled to cope with life for all of my 35 years. Some of my very first memories are of wanting to rip my skin off when people spoke to me. I was roughly 18 months old — I know this by the shoes I wore. Inside, I felt like I was an alien living in a world I didn’t belong in. That feeling stayed with me to this very day.

I have many sensory difficulties. When people eat, even in the next room, I become so angry inside that I feel like I want to punch them. I never have, or would! But it has a feature of daily life that often tips me over the edge. I wear the same trousers that are jersey, stretchy and have pockets. I have them in different colors, but they feel the same. I become very overwhelmed with smells, and the sight of some substances instantly makes me gag. Loud noises such as sirens instantly make me feel like I’m going to die from anxiety.

In the past decade, I’ve had numerous mental health issues, including two mental breakdowns. I’ve been misdiagnosed with bipolar disorder, and then almost misdiagnosed with borderline personality disorder.

I fought with every ounce of my body to overcome my difficulties for my beautiful children. My girls come first, and they always will. I have come far enough to know I am a good mum, and I always have been. This has included asking for help when I couldn’t or didn’t want to. The professionals involved in my care have never once had any concerns about my parenting nor my children.

My journey with autism began in 2015, when concerns about the difficulties my youngest daughter had with life started to rapidly increase. Through some training and researchers, I just knew deep down that she was autistic, but she masked her difficulties like a pro.

My daughter has always been very adamant that I’m the only person who understands her. I just seemed to know what was wrong or what she needed, and I also knew I had to fight to get her the right support. This is why we ended up paying to see somebody privately for diagnosis, rather than wait on the years-long NHS waiting list. We didn’t have years; she was deteriorating rapidly.

She was diagnosed with autism spectrum disorder in September 2017. As much as anything, she needed to know she was not “on the bad side” as her brain told her. She’s not broken, she’s autistic. She is not “ill” — in the words of Temple Grandin, she is “different, not less.”

Despite having a diagnosis, things didn’t change at school. She appeared “fine” there, but continually not having her needs met meant that she reached an extremely mentally unwell place. (I won’t discuss it in detail as that isn’t fair to her.) This is the effect masking can have on an autistic person, and this is also the effect of not having her needs met for a great deal of her day, even though we do everything we can to meet her needs at home.

As we approached the end of 2017, despite the effect of our daughter being so mentally ill, I reached a place where I no longer felt unwell mentally. I’d just ended therapy to help me overcome some of the trauma that had affected me over the years. We then had a lovely Christmas holidays, and did some lovely things together. But as we reached the end of the holiday and neared school again, I had an internal meltdown. I was so confused. I was in a great place mentally, yet I was falling apart for no reason, and it threw me. My anxiety raged inside, and it was at the sort of level I can only describe as my brain needing to explode out of my head.

As I tried to logically work it out, I realized I felt like this at the start and end of every holiday period. Then a lightbulb went off. Oh my goodness, I was having an internal meltdown because my routine was changing. It was such a bizarre moment. It was like someone started to play me an alternative version of my life where I realized I was autistic. Suddenly all the pieces fit together. My helical matrix that I’ve spoken of before suddenly was complete.

From this point onwards, I began to self-identify as having autism/Asperger’s. Lots changed at this point. I became much kinder to myself; no wonder I continually found life difficult, because I’m living in a world not designed for me. I joined some Facebook support groups and finally felt at home. I stopped feeling lonely. And as the months passed, I just needed to know for sure. It was important for me not only to have that validation, but also to understand myself as much as possible.

I spoke to a few friends about the possibility of being autistic. Some agreed, some disagreed — but I didn’t allow that to knock me, as I could see that by this point I knew much more about females on the spectrum than them. Some of them may recognize signs in my life, if I point them out — for example, I’m considered to be a “hoarder” in a jokey kind of way. That’s generally because I collect things (like mugs), but also because I struggle to let go of things.

Executive functioning difficulties mean I find it incredibly difficult to be tidy. Having continually been labeled as lazy most of my life, I can finally prove I’m not. I have difficulty starting something, or knowing where to start, and I get in such a state that I can’t do any of it. I’m lucky that I get help with this throughout the week from my personal assistant.

The last sign that I guess is evident is my ability to hyperfocus. This normally looks like me starting a new craft — researching, watching videos, reading books, buying every bit of equipment I need, then eating, breathing and sleeping it until I lose interest and move on to something else. When I was crocheting until the early hours of the morning, it was mistaken to be mania, when actually, I was just enjoying it so much that I couldn’t stop. Ask my husband how many boxes of forgotten crafts we now have in our shed…

I also have difficulties with my emotions. My general daily setting is anxious. If I didn’t feel anxious, I’d think I was dead. I only feel other emotions when they become extreme and overwhelming. I also absorb others’ feelings, and this is super difficult. Being able to feel someone else’s sadness in an extreme way, without them saying a word, and then not being able to fix it for them sometimes feels impossible.

On the flip side, when I feel joy and happiness, although I can’t describe what those emotions feel like, I can show you pictures, or describe what I can do to feel like that.

I also started to realize I have an inner dialogue others don’t seem to have, mainly checking that the things I’m doing are correct. Have I asked about the other person enough? Why are they pulling that strange face? Did I say the wrong thing? God, they’re looking me in the eye again, can I look away yet? How long can I get away with not looking back?”

Eye contact is a funny one. Up until the past six months, I thought everybody found it painful! I literally feel like someone is looking into my soul, and it burns so very much. When I was younger, I used to avoid eye contact, particularly if I was getting told off, as if I looked the adult in the eye, it made me laugh — which is obviously pretty inappropriate when you’re being read the riot act, but was also completely uncontrollable.

I often find it difficult to get to my emotions. I do such a good job shutting them off to hide them from others that I then can’t reach them. The best way I’ve found to connect with my emotions again is to listen to music. Music has always been important to me, and has always invoked such strong emotions. Sometimes a piece of music I’ve never heard before can bring me to tears. Over the years I’ve gradually made playlists for whatever emotion I’m trying to get to.

I feel incredibly lucky that I can connect to music and my emotions in this way. Music takes me to a place where I feel utterly alive in every cell of my body. Often I’ll just listen to the same song over and over again for hours to allow me to fully and truly feel what I need to. And despite finding loud noises overwhelming, I’ve found complete and utter joy attending music concerts — yes I find the crowds, traveling and lights too much, but the buzz I get from the live music makes it worthwhile. I just have to plan in “recovery” time for a few days after.

Ironically, after my four hour assessment and diagnosis, I went to a music festival — not my smartest move, but I forgot to put the festival in my calendar. There go the the executive functioning issues again — calendars and reminders rule my life, and even then, I still forget to do things! As I sat there at the end of the evening, flipping a bottle cap over and over in my hand, feeling alive — utter overwhelming joy — it hit me. Tears. All of the wondering, all of the feeling like an alien in this world, the impending sense that I did not deserve to be here — it all fell away whilst I sat on my own, watching one of my favorite songs by Years and Years. It’s not as simple as that; it was never going to be. But it was a pinnacle moment for me.

If you can’t see by now how important having a label is and was for me then I’m not sure how else I can explain it to you. I keep thinking about how different my life might have been if I’d had this label at age 7 like my daughter. Having said that, we haven’t got to the point that it has helped her yet. But it will; I won’t give up until she has the support she needs.

I also feel so sad for my younger self. I didn’t have anybody who understood me like my daughter does. I don’t blame my parents, despite having concerns about my development from 10 months onwards, and even if they’d have pushed my assessment with a family psychiatrist further at age 10, I still wouldn’t have been given the right label.

Research about females on the spectrum is so fresh that it hasn’t filtered through to professionals properly, even now. This is why I chose an assessment with a lady who has a specialist interest in females and masking.

While we are talking about the assessment, I want to make it clear that this was not an easy process, nor a label that is given without a lot of evidence. It was four hours of having every part of me and my life unpicked. Each time I had a break, I sat silently rocking in the rocking chair, tears streaming down my face with the fear that I was wrong, even though I’ve known the answer deep down since January 2018.

Both myself and my daughter are now correctly labeled as autistic. I feel like shouting it from the rooftops. And it’s strange, as sometimes when you tell someone your child is autistic, they say “oh, I’m sorry.” This has always completely confused me. Why would I be sorry that me or my daughter are autistic? If we didn’t have autism, we wouldn’t be us. It’s so ingrained into our personalities that if you took it away, we’d no longer be there. That is why in our house we are “autistic,” we don’t “have autism.”

I urge anyone reading this to pursue a diagnosis for yourself or your child if you feel in your gut that you/they are autistic. I firmly believe early intervention is key to growing into an adult that can cope. I also firmly believe that if I’d had the right label, I’d have avoided so much mental pain and illness.

But I’m not going to dwell on that. On 8/18/2018 I drew a line, a line where my life in color finally starts; it is no longer black and white. And for me, that means everything.

Getty image by Andrey Popov.

Originally published: September 10, 2018
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