Posts

Reasonable adjustments give you an unfair advantage This isn’t an autism-specific myth to be fair, it can be applied across all disabilities. There seems to be a genuine belief that by offering accommodations and reasonable adjustments (a legal requirement in many situations), we are being given a head-start that is unfair to the non-disabled folks. These adjustments are simply meant to even the playing field and remove barriers for us. They bring us up to the same starting point, they don’t put us ahead. ...

I sometimes feel strange talking about being autistic because it feels so new to me. But, of course, it isn’t. I have been autistic my whole life, I just wasn’t aware of it until recently. I don’t think it is an exaggeration to say that discovering I’m autistic has changed my life, and possibly even saved it. I have done what I imagine most late diagnosed /late discovered autistics do and dived right down into it, reading and listening to everything I can find about it. Consuming research, stories, statistics and building out a network of others whose brains work like mine. ...

I didn’t know I was autistic when I was pregnant, or actually until my son was five years old. Looking back now, I can see how being autistic affected my pregnancy in a lot of ways, but of course I’ve also never experienced being pregnant and not autistic so it’s hard to know how many of those things are just a universal experience, or unique to me for other reasons than my autism. Either way, it was certainly an experience! ...

Autism isn’t a mental health problem, but for me there’s a lot of overlap. Would my mental health have been better if I had known earlier that I was autistic? Absolutely. Being autistic does cause me some very real struggles in my day-to-day life, and there are mental health implications of those. But for me, looking back at my complicated and uncomfortable journey through various mental health problems, there’s no doubt in my mind that a huge part of those struggles was down to me living undiagnosed, not understanding myself or my brain, and trying so hard to force myself into a mould that was never made for me. ...

I imagine if I come back to this in another year or two, I’ll be adding to this list and looking back on myself where I’m at now and shaking my head. Because things change, and we learn as we go. I’m sure there will be at least a few more surprises and lessons along the way. But for now, I wanted to look back on the last eighteen months of my life post-diagnosis. I’d prefer to say post-identification as I hate the fact that we need to ‘diagnose’ autism, given it categorically isn’t a disease or illness. But I do mean diagnosis here, because that was the formal process I personally needed to go through to get the understanding of myself that I was searching for. Self-identification is totally valid in my view, but for me, I needed someone else to confirm it for me, because I know I’d have doubted myself otherwise. And it was that particular turning point that I’d love to go back to, and give some advice to myself at that point. Because there wasn’t really anything available. No guidance, no information on what might come next or how I might feel as I processed this huge new piece of information about myself. ...

It is well recognised, at least within the autistic community, that functioning labels are not useful or affirming. It’s good to see them being used much less frequently, and people instead often focussing on a person’s support needs. Importantly though, these support needs can and do fluctuate for most if not all of us. I think the dynamic nature of our needs is an area where there is one of the lowest levels of understanding and acceptance when it comes to autistic folk – although of course there are sadly many of these. ...

Things I’m scared of happening when I talk about being autistic: I’m scared of being misunderstood. Of not being believed. Of being dismissed and made to feel bad for who I fundamentally am. I’m scared of people’s ignorance and lack of any inclination to actually understand me. I’m scared of being thought less of. Of being judged and found lacking. I’m scared of my rights and freedoms being taken away. I’m scared of my abilities as a mother being brought into question. I’m scared of the exhaustion that comes after just trying to explain myself and the impact that has on my mental and physical health. I’m scared of being invalidated and told that the things I struggle with can’t really be that bad. I’m scared of hearing the same old ignorant responses. I’m scared of being watched more closely, of people waiting for me to trip up somehow. I’m scared of people walking away. I’m scared of people staying around but treating me poorly. I’m scared of all of these things breaking my already barely existent self-esteem. Things I’m scared of happening if I don’t talk about being autistic: ...

I wasted a huge chunk of my life trying to fit in and find acceptance in spaces that I didn’t feel comfortable in. Into friendships that I got nothing out of. Into relationships, workplaces, situations that felt bad to me. I always thought that it was because I wasn’t trying hard enough, or I was doing things the wrong way. Mostly I thought, deep down, that I just wasn’t good enough, or that I was irredeemably broken in some way. ...

As ‘autism awareness’ April disappeared into the rear-view mirror earlier this year, I was left pondering the topic of autism acceptance. Debate in the autistic community around the terminology and focus for the month often centres around what we should be fighting for. Awareness seems moot – everyone by now is aware of autism and that autistic people exist, albeit they may have very limited and misinformed views of what that actually means. And therefore, many people want to see the focus put more onto autism acceptance, which seems to make sense. You know we’re here, but we now want you to accept us, as we are, and presumably a further step or two, in terms of embracing us and genuinely allowing us to feel like we belong. Which doesn’t sound like that much to ask really, but we are clearly a long way from that, as the recent slew of horrendous news reports showed us. ...

When I received my formal Autism diagnosis, I was also given a short reading list that I was told may be useful. None of the books on it were written in the last ten years and not a single one was written by an (openly at least) autistic writer. It felt like a huge miss. Fortunately there are many brilliant books written by autistic authors that do exist out there, and over the last couple of years I have devoured an awful lot of these, and learnt so much from them. I would love to talk through all of them, but for now I have picked three that have really resonated with me, which I’d highly recommend to others, and which I wish had had spots on that initial reading list I was given. ...