“If you’ve met one individual with autism; you’ve met one individual with autism.”
May is Mental Health Month and as an avid support of talking about mental health and stopping the stigma that has been related to it for far too long, I have decided to do a series of blog posts exploring all aspects of mental health. I have already explore resilience and fully understanding self-care in my post Let’s take a moment for resilience and how our furry family members can help with mental health Pets don’t see imperfections…
This is my third post in the series and it’s a lot more personal than the others have been so far. This post will be based on my experience with neurodiversity and it is my truth. Later on, in this series, I will do another take on neurodiversity and give more detail about things that work for my family and how we cope with situations, but for now, here’s my story.
Like many things in life, I never thought that I would ever be sitting here writing about autism, nor did I ever think I’d be writing it about not one, but two, main individuals in my life. I had heard a lot about autism before I met my husband but to my knowledge, I had never met anyone with neurodiversities. Like many, I was labouring under a lot of misconceptions and hadn’t realised that there was such a variant in symptoms and levels of the spectrum.
10 years ago, I met my now, husband, Dan, and my life changed in many ways.
I had never met anyone like him. He was, and still is, full of character, so animated and instantly I knew he was my soulmate. There was no way anyone else could possibly have the conversations we did together, he understood me like no other ever has. For the first time in my life I dropped my guard with him very quickly and within a month or two of talking online he was one of my closest and best friends. He wasn’t put off by my, sometimes brutal, honesty and he told me things about his life that he said was difficult to tell others because no one really understood him. I didn’t know he had high functioning autism because he didn’t either. He had never been diagnosed and, in his own words, he was branded ‘a bit of a loud mouth and class clown, they don’t expect much else from me, I’m the screw up’. Even knowing him for the short time I had at that point, when he first told me this, it broke my heart because I knew none of it was true. He was already the most loyal, funny, caring, genuine person I had ever met. I knew how rare a person he was and I knew that now I had met him I never wanted my life to be without him.
Fast forward a head a little and we got together, in what was possibly one of the most confusing and awkward ways anyone has ever told me how they felt about me but at the same time probably one of the most endearing too. That’s Dan in a nutshell; he’ll say things in the most difficult way but you can’t help absolutely adoring him more for it. It wasn’t until I started meeting people in his life that things started to make me question things more. I remember the first meeting of his family and it’s one moment in my life that I won’t forget how I felt, unfortunately not for the best reasons.
When I meet people for the first time, I like to take a step back and just observe. I see how each individual speaks with me and acts towards me, I see how the dynamic is between each person and I will then take all that information in to know what boundaries are needed, not only for these situations but per person. I’m not a very extroverted person generally and until I know people I keep myself guarded but I am always polite and if someone says something or acts in a way I don’t feel appropriate or comfortable with I will say something. I knew right away that there was going to be personality clashes in the future and on the drive back to our hotel room that night I told Dan this, not to try and be awkward or cause issues but because I couldn’t pretend with Dan about how I felt. We were in a long-distance relationship to begin with so I wanted solid foundations from the start. He then showed me a text message on the same journey from a member of his family who decided that their approval of our relationship could be given but they thought I may be “They were a little too crazy for my liking”. This was not the case, I like crazy and quirky, obnoxiousness however, I don’t like. The most blatant thing that night was that Dan changed completely around them all and it really threw me, I was completely taken aback. I wasn’t prepared for him to have such a change in personality. I had never seen him behave in such a childish manner and he was bordering on rude and disagreeable. It really shook me as I had previously been in a mentally abusive relationship prior to being with Dan and my ex would act one way towards me when things were good but then in arguments he would tell me I was worthless, crazy, that my opinions were stupid, that my family was awful, that he didn’t care about me and wanted me to shut up etc and I don’t trust people now who say one thing but their actions say another or who are one way with me but someone else around others. I need consistency and I don’t appreciate behaviour like that. This event made me think that Dan wasn’t the person he had been and being 320 miles from home with no friends apart from Dan, this was terrifying. Thankfully upon talking about it, he told me ‘It’s who they expect me to be. They don’t want me to be who I am, they want the class clown. They make me anxious when I’m around them, so I change’.
Once we started living together things quickly changed for us and I saw more and more traits in Dan that were completely different to the talks we had had in person, phone or messaging previously. I found out then it was because he could prepare, not in a way of tell me what I want to hear, but in a way of he could think through what he was trying to communicate. I found out he wasn’t good with stressful situations in person, he became almost catatonic at times when arguments or disagreements arose and I saw a side of him I had never seen. He self-punished himself mentally so much, he got frustrated and angry with himself when he couldn’t get words out and he told me he hated himself and how his head worked. He then started to space out and clench his fists and shake. I put my hand on his and asked him to relax but it was too late, he started hitting himself and crying and it took everything I had to make him stop. I saw this 6ft 7”, broad shouldered, laid back, incredible man crumble and breakdown to an anxiety ridden, overwhelmed, scared little boy and I just wanted to protect him.
The more situations we went through and the more we learned about each other it was obvious to me that Dan was definitely on the spectrum. It wasn’t until we were married and had had our first son Macen, that Dan finally managed to get a diagnosis in 2017 of ‘High Functioning Autism’. HFA means that WE experience THEIR autism mildly. It takes a lot of hard work for that person to be at the level they are at and to constantly maintain that. It took around 18 months in total for him to be diagnosed and when he was, the psychiatrist said that unfortunately, with him being an adult there really wasn’t much she could suggest for us. I reached out to autism organisations who gave me a lot of reading material for us and tips on what might be useful for him but other than that we haven’t had much help. We have very much had to find our own feet in it and adapt together.
I don’t sugar coat anything and I never pretend that things are something they aren’t. It’s not always been the best of times for us and having a neurodiverse partner can be just as difficult on me as it is on Dan being neurodiverse. There have been many times where I feel like I was lied to or deceived because I wasn’t told that this was who Dan was. It wouldn’t have made my decisions to be with him and marry him any different, it just would’ve allowed me to get a better handle on it within myself so that I could help Dan with it better. I’ve had a lot of anger that I’ve needed to work through in regards to it, not just for me and the frustration I can feel but more so for my husband because I know he feels burdened with the way his head sees the world at times.
The way we function is completely different to a lot of couples but it works for us and that is really all that matter to us. Dan and I don’t have a typical marriage. We both recognise the wild in each other and instead of trying to tame it we run with it. I am very strong woman, I grew up without a male role model so it has taken a lot of work for me to know where I need to let Dan in and to know he’s not trying to make me any less of myself. He isn’t trying to silence me or thinking I’m less capable than he is. I have done a lot in counselling the past 18 months to try and understand myself and what I need from myself for myself so that I can be a better person for everyone in my family. I have had to work through issues to allow myself to be in a place where I could be more confident in my own self-worth that I could distance myself so that Dan didn’t feel as much pressure. I have had to learn how to filter my feelings and get a good grasp of what is true and what isn’t and then think about how is best to approach those feelings and the situation with Dan as well as trying to remember how Dan filters things and what he really means when he says certain phrases so that I am not upset or offended and he remains engaged and understands. I also check in with him at numerous points in conversations to allow him a recap, to make sure he is okay and that we have both understood things correctly. This is all the energy and the process that goes into communication for us as that is where Dan’s diversities get him the most, communication.
There have been many times where I don’t at all feel like his wife but instead his mother because of the way I need to speak to him and organise life for him. There has been and there will be again, times where I feel like I am not cut out for this relationship as I have chronic illnesses that mean I have to be very careful with the amount of energy I use for things daily and with how much stress I put on myself. When I was diagnosed, everyone always said how wonderful Dan was for looking after me the way he did and continues to do and I have always been grateful for him and how he loves me despite these illnesses. I don’t think anyone realises though that I look after Dan and have to give up a lot more for Dan with his neurodiversities than he has had to with my illnesses. It is certainly a constant battle to get a good balance and to make sure neither one of us are feeling resentful.
I’m not only a wife of someone with neurodiversities, I am also a mother to someone with them also. Our eldest son Macen is also high functioning autistic and I’ll tell you now, it’s not at all for the faint hearted. I absolutely adore my son, from the minute I held him I told him there was something amazing within him and I was always going to be there, I was going to be his biggest fan. This is true to this day and will be for all my life. My sons aren’t just my sons they are genuinely two of my closest little buddies and I love hanging out with them and creating more of a bond together and understanding each other. Macen isn’t like most kids his age and that is not at all meant in a negative way nor in a conceded way. For Macen, he finds it really difficult to process and understand emotions and boundaries. It is almost as though in his head he is at an intelligence and capability level of someone much older than he is but his emotions are still a few years behind him and the conflict and frustration within him is sometimes very obvious to see. He can very easily see the negative in situations and he continues on that negativity train way past the station until he ends up wrecked in a siding and starts to, like his Dad, self-punish in his own head. He will tell us to take his tablet away, his favourite toy, tell us not to feed him for weeks and he can just be hungry and this spiral comes within seconds but last for a long time. Some days are easier than others to bring him around, some days he’s only just out of that headspace when something sets him off again. This can be something as minuet as Dad clipping in his seat belt when it is Mum who does it. It can be going left on a road he thought we were turning left on. A lot of the time it is a very complicated dynamic between Macen and Dan and when arguments arise between them, neither one of them knows when to stop and it can make me feel like I’m the only adult in our household. It’s not always easy for Dan to remind himself that he is the adult in situations with Macen, they are so alike that they clash intensely.
In these times, it can get really difficult to not be angry, mostly at myself. I feel like as a mother, I should be able to make my child feel better. I always knew there were times that I wouldn’t be able to completely solve their problems but I always thought that I could at least make them feel happy and supported. On the days Macen seems so unhappy with life, it absolutely breaks my heart and I have had many days where I will sneak into my bedroom and just cry because I feel helpless and depleted. I feel so much guilt that I can’t be the mother he needs me to be. I feel I try everything but sometimes It’s just not good enough and that feeling doesn’t sit well with me at all. I try to be the person to my boys that I needed when I was younger and most days I know that I’m doing what I can for them and I’m comfortable with that but there are definitely some days with Macen where I feel like I don’t understand why I was chosen to be his mother and that I’m not the right person to guide him through his life and make him all he can be. I worry that the way I handle situations will mean in 20 years’ time, he’ll be speaking to his own “Shona” (My counsellor) talking about the issues he has within him like I have because I treated him in any way that didn’t make him feel worthy. The thought that I could cause him any kind of anguish or anxiety fills me with absolute dread and makes me feel sick to the pit of my stomach.
I want to turn this around as it has been all about the difficulties and the negative and I don’t at all want neurodiversity to be viewed as something negative. It isn’t at all. My husband and my son have changed me for the better. My husband dragged me out of a dark place when we met and he loves me, unconditionally, regardless of my demons. In fact, he loves me even more when I am fighting those demons. I have never met someone as devoted to me in my life. He really would take a bullet for me and our boys, anything to make sure we were safe and protected. Dan makes me genuinely laugh when I don’t feel like laughing, something nobody else has ever been able to do. He makes me feel at home, he supports me and encourages me in all I want for my life outside of being his wife and a mother to our sons. He is compassionate beyond measure at times. A lot of people think that having autism means that person is cold and mechanical like in emotions. This isn’t at all the case, especially for Dan, if anything he cares more about people than he can comprehend. He wants to do the utmost for them so he gets worked up in his head because he wants to fix their issues and make them feel better. He amazes me with the way his head sees things, he can look at a piece of paper or Lego and make the most incredible things that I just can’t even comprehend. He is honest and I know he will never tell me something just because he feels it’s what I want to hear because that isn’t the way his head is programmed. Most importantly, he is the only person I have ever known who has never tried to change me. He hasn’t never told me I’m “too”, he’s never critiqued my personality or poked at my flaws or insecurities, he has only ever accepted me and loved me, even in times I’ve questioned why he would.
Then there is Macen. The boy who made me a mother. The boy who runs to me the minute he sees me at the school gate at the end of the day and gives me the biggest hug. The boy who allowed me to discover hidden strengths and weaknesses I never knew I had. The boy who amazes me each day with how much he grasps life and adult situations as much as he challenges me each day. The boy who has taught me how to be patient and how compassion and kindness can manifest in different ways. The boy who has taught me to be open and let my guard down. The first boy to completely and utterly steal my heart. The boy who I fight for every single day. The boy who faces his own challenges with resilience, courage and poise. The boy who I know will make such a difference in the world some day because he has already done that in mine. Always and forever I will love him, he is the boy who made me a better person for our family.
Neurodiversity can make life difficult, for those with them and for the neurotypical people in their lives but I will tell you something, I wouldn’t change my husband nor my son for the world. They are 2 of the greatest humans I’ve ever met and I don’t care that we have to live life using a different road map to others, as long as they are with me on this crazy journey that is all that matters.
Love hard. Be fierce. Horns high.