Sunday, August 18, 2019

Our Partners and Autism Acceptance

Last week, I read a post from a lady who didn't feel accepted by her partner. The interesting thing was that while she knew what she wanted to say, she felt that she couldn't talk to him about her autism. 

She was considering the next steps in her relationship but was going into it without the tools to communicate effectively. 

Until quite recently, people with autism tended to fall into two broad categories; 

  • Those who were diagnosed with autism because they exhibited behaviours to such an extent that they were unable to get into long term relationships, and
  • Those who went undiagnosed into a relationship. 

These days however, it's much more common for people entering a relationship to know that they're on the autism spectrum.

In this post, I want to look at the benefits of disclosing autism to prospective partners.

Why is it becoming more common?

A couple of decades ago, it was relatively uncommon for people to get married with the knowledge that they were on the autism spectrum. After all, the people getting married for the first time in 2000 would need to have been diagnosed around 1980.

Although Asperger's and Autism were researched in the 1930s and 1940s, Asperger's syndrome wasn't even a diagnosis until 1994 and the diagnosis of "autism" tended to be reserved for the more extreme cases most of whom were not expected to marry at all.
The media often talks about the "explosion of autism". It's not the case that autism is becoming more prevalent but rather that we're getting so much better at detecting it.

As a result of our improved diagnostic abilities, couples getting married today, particularly older couples are much more likely to know that autism is part of the package before they tie the knot. 

Is disclosure necessary?

While disclosure isn't absolutely necessary, it's certainly an important consideration. If you disclose autism too early in a relationship, chances are that you'll scare your partner off.  If you disclose after the wedding, they'll feel like you lied to them.

Ideally, the best time for disclosure is when the relationship is very solid and engagement is becoming the likely next step. 

The real question is, whether or not you should disclose your differences. After all, your partner already knows you well and loves you for who you are. It's not as if having autism prevents you from having children, though there's a higher than usual chance that your children could also be on the spectrum.

One of my favourite moments last week was when actress/commedienne Amy Schumer was asked how she could cope with the possibility that her child will be on the spectrum. Her response was beautiful;

"how I cope? I don’t see being on the spectrum as a negative thing. My husband is my favorite person I’ve ever met. He’s kind, hilarious, interesting and talented and I admire him. Am I supposed to hope my son isn’t like that?"
- Amy Schumer

I feel that disclosure is important because you need to know if you partner is willing to accept you, even with a label. You need to be able to talk to your partner about autism, traits, stims and sensory difficulties if the relationship is to grow and develop. There's also the importance of being honest in the relationship and the fact that the truth will always come out eventually. 

Can disclosure help?

While there's always the risk that disclosing your autism to a potential partner may cause them to leave the relationship in a hurry, or worse, may give them a handle with which to bully you, this won't happen with a good partner.

A good partner will listen to your issues and will learn how to predict them, how to work around them and how to make you feel more comfortable in difficult situations. A good partner can be your co-pilot for life.

A good partner isn't going to take your news and suddenly be an expert on autism. You'll need to coach them through your needs and teach them how best to help you. Over time however, the disclosure will help and a good partner will begin to anticipate those needs -- sometimes even before you do.

How do we talk about autism?

The best way to talk about autism is both factually and positively.  Autism already has enough stigmas without adding to it. Try to avoid blaming your partner for things and try not to have the conversation when you're stressed.

Instead of telling your partner all of the things that they do wrong; "you don't do this" or "you don't care" or "you always criticize", try telling your partner what they can do right.  For example, explain that getting organised is something that you struggle with and ask for help.  Explain that places with loud music or strong smells can make your sensory systems go into overload. Agree on signals with your partner that will allow them to understand how you're feeling.  For example, if you say "this place is a bit overwhelming", it might be a signal to your partner to help you make whatever apologies you need to and get out.

Let your partner know how you want your autism disclosed. Are you comfortable with others knowing or do you want to keep it limited to a few individuals.

The right sort of partner, a truly loving partner, will do whatever they can to help you. Letting them know how they can help you is a critical first step. 

What should you expect from your partner?

No partner is going to be perfect and understanding autism isn't easy for someone who is not on the spectrum. You'll need to accept that sometimes your partner will do or say the wrong thing. It's fine to be a bit annoyed about this but unless they're deliberately trying to upset you, forgiveness and gentle correction will always be more effective than negative reinforcement.

If you're autistic, then you've had autism all of your life. It's part of you. It's amazing how many things (positive and negative) we autistics take for granted that neurotypicals don't share. 

You can't expect perfection from your partner but provided that you're considering their needs too, you should be able to expect them to keep trying to make the relationship the best they can. 

Sunday, August 4, 2019

Being an older adult with Asperger's Syndrome

A couple of weeks ago, I officially hit the big 50. I guess that makes me an "older adult" now. Nothing much has changed but I thought it would be worthwhile looking back over 15 years of diagnosis and talking about what it's like as an older adult on the spectrum. 

The Words

I still tend to use the word Asperger's to describe myself. It's not because autism is necessarily a bad word, it's more that this was what I was diagnosed with. Obviously I haven't gone back to the doctor to seek a wording update. There's really no point as I already know what it would be.

When I'm writing, I'm increasingly trying to use "autism" but that's mainly to help me connect with my audience. If I talk to an older person, I use Asperger's and if I talk to a younger person, I use autism.

In terms of "whichever first" language (person with autism vs autistic person) is mostly irrelevant to me. I'm actually a "Person with Gavin" or a "Gavin Person".  In fact, If I was talking to someone techy, I might say Person.Type=Gavin

There are lots of different labels and while it's true that some (retard) are offensive regardless of who uses them, the offensive nature of most of the words are determined by their context and the intent of the person who uses them.

At this point, I've transcended the simple labels of autism. I have a name and I have a much deeper understanding of what it means to be an individual. I tend to use the labels interchangeably but only in a positive way and never at the expense of the individual. 

Who I am

Upon being diagnosed at 30 I spent about a decade processing the news and re-evaluating most of the key decisions and conversations in my life. It wasn't a choice that I made, it just happened. I was simply unable to stop thinking about it.

It was a long and at times painful process but I've accepted that I'm responsible for some truly cringeworthy moments due to my lack of understanding of the feelings of others. I also understand that many of the things that happened were out of my control, so I've been able to forgive myself for them and let go of the past a little.

I've also realised that people did "use me" over the years and that a lot of jokes and cruel things happened at my expense. Since none caused lasting physical damage, I'm able to take those lessons to heart, forgive and move on.

I don't hate anyone for taking issue with the fact that I was different. It was a very different and less tolerant world forty or so years ago. 

I do however keep watch on the younger generation and try to help them out with encouragement, opportunities and a little positive push every now and then. Things that I needed myself when I was younger.

I'm trying to pay forward the help that inspirational people in my life gave to me. I'm increasingly accepting people for who they are and I'm loving the understanding and colour that comes from embracing diversity. 

Working Life

In my working life, I've stopped the self-centred acts of trying to push for better things, higher things or more responsibility.

I'm enjoying my place on my team and being with people who truly care for me.  I've realised that caring for my colleagues is so much better than being the boss. I no longer get bothered by people at work who have things that I don't or who are offered opportunities that I'm not.

Let's face it. At 50, I'm one of the lucky ones because I've still got a job. I just concentrate on doing it as well as I can and helping those around me to do well too.  At the end of the day, I'm happy to be able to leave my stress at work and come home to my family. 

My Parents

Anyone who's 50 has parents who are 75-80, perhaps older. Increasingly, the focus drops away from looking after your own kids and draws towards looking after your parents. We already lost my entire grandparents generation some years ago, and as generations are only 20-30 years apart, it's clear that time is not on my side.

It's become important to learn who my parents are in order to preserve their memories, words and love for future generations. I guess that's why it's so common for fifty-somethings to take up genealogy. 

My sister and I with my parents a few years ago

It's also important to tell your parents how much you love them. In my case, I find it really difficult to approach these subjects and to acknowledge what I was like as a child. My meltdowns back then were frequent and uncontrollable. If I didn't hit things and break them, then I said words that I regretted. Some of the words I said, particularly to my mother and my nana still burn today. I don't want to even acknowledge that I said them but it's hard to apologise if I don't.

Then there's my father. Every single kid seems to have father issues. Sometimes it's because dad's are rough, don't cry and give no quarter. Sometimes it's because those dads are also on the spectrum and don't know it. Sometimes the problems are with you and not your father. My dad certainly had his fair share of issues and differences but he was also the hero that I really looked up to.

I was abrasive with him well into my thirties but if I think back on it now, most of that anger was because he was simply too good. Too untouchable. He was the pinnacle to which I aspired but could never reach.

At fifty, I've well and truly made my peace with that. I know that I'll never have some of the skills that he has but I equally acknowledge that I have a different set of equally untouchable skills. We're very different he and I but at heart, we're also very much alike. He was never a very emotional man and I'm still working up the courage to tell him how much I love him. Eventually I'll get there. 

My Kids

My kids are now more or less fully grown into young adults. They are only a few weeks off being nineteen and sixteen. I've had to accept that in some ways they're not entirely like me, one of my kids is messy as hell where I was a clean freak. In other ways, they're very similar and this annoys me at times. Sometimes we feel too similar for comfort.

I want them to stretch out their wings and explore possibilities but I have to accept that modern life seems to move slower these days. 

I used to say to them when they were in school, "you'd better hurry up, at your age, I'd already kissed the girl I was going to marry". These days, my plans for them are less about kissing people than just getting off their computers an leaving their rooms every now and then. Parenting keeps changing and every generation seems to have a different version of the same old problems to solve.

On the plus side, having the kids grown up means that I can spend time reconnecting with my wife and going out. The only issue is that at 50, health issues prevent you from doing everything you want to do. 

My Dreams

Despite my advancing age, I still feel like a kid trapped in an adult's body. I have conversations with people and I feel as if they're suddenly going to realise that I shouldn't be sitting with the adults. Sometimes it's hard to imagine that my grandparents probably felt this way too. Everything was so prim and proper and serious back in those days.

I've had to let go of my impossible dreams, things like "making it big in IT" or becoming a famous writer, scaling mountains or doing things that are no longer safe in this older body. The thing is, I now recognise these things for what they were, simply "dreams".  My notions of what is important and what is not have changed so much over the years.

At fifty, I can look back and say that while I felt at times I was on the wrong path, the truth is that nearly everything I've been doing has been important - and I can draw strength from this realisation. Being happy with who you are is the most important thing of all. Sometimes it's not the easiest thing to do but with effort you can get there.