Late Diagnosis of Autism interview

Hey Aspie Daddy fans,

I recently did an interview for a site called Learn From Autistics about living with a late diagnosis of autism. It is the first of a two-part series.

Click here to see it and thanks for reading!

Gillan

Advertisements

Millennial mothers: Grow the hell up!

When people talk about millennials, they can’t fail to bring up two things: their addiction to social media and their overinflated sense of entitlement. In the three years since becoming a father, I’ve discovered that when you add motherhood into the mix, an addiction to social media and an overinflated sense of entitlement combine to create a perfect storm that threatens the very future of society. Hyperbole? Perhaps. But this post is a request, nay, a demand that certain people grow the hell up before they suck all the joy out of one of life’s genuine grown-up pleasures: adult friendship.

Now I’m not saying that all millennial mothers need to get in touch with their ‘inner adult’, and I’m not even sure it is restricted to the ‘gentler’ sex – since I have no friends of the masculine variety in the millennial generation, I’m lacking data to make a comparative analysis – but it happens often enough for it to be an issue. It might even have nothing to do with motherhood – perhaps there are significant numbers of women who act like they belong in a school playground even without having procreated – but golly gosh it needs to stop.

What am I talking about? Well, it’s probably best to begin by explaining how I, an autistic male born in the 1970s, understands friendship. To me, friendship is a one-to-one relationship with an individual that rests upon shared enjoyment of certain activities, backed up by compassion and understanding. If Person A invites me to the cinema with Person B, and then another time Persons A and B go to the cinema together without me, who cares? My friendship with Person A has no bearing on their friendship with Person B, or C, or D for that matter.

What if I’m also friends with Person B and want to invite them out for a coffee? That’s no problem either. I don’t have to check with Person A if that’s okay because I haven’t needed to ask anyone’s permission since I first grew facial hair – I can be friends with whoever I want. Sometimes all three of us will meet up, sometimes just two. You meet up if and when you want to and if you don’t, you don’t. You demand nothing and expect nothing. An invitation to a social encounter is a privilege, not a right. That’s what I understand of friendship.

Among the millennial mothers who have befriended my millennial wife, however, friendship seems to work in a completely different way. It’s like they’re all married, or something. Whether they’re friends from NCT, friends from mother-toddler groups, old school friends, it goes like this:

My wife and Mother A bump into one another while out with the kids and spontaneously decide to have a coffee. Afterwards, Mother A posts this on social media. Mutual friend Mother B, seeing this, then sends both Mother A and my wife a snotty text-message demanding to know why she wasn’t invited, and saying how hurt she is to have been excluded. This leaves my wife and Mother A feeling awkward and guilty about doing something completely normal. So they apologise and arrange to meet up with Mother B and her kids.

They do this and share it on social media, whereupon Mother C, who is friends with my wife and Mother B, then sends them both a snotty text-message demanding to know why she wasn’t invited, and saying how hurt she is to have been excluded, especially when she’s known you so much longer than Mother A. So my wife and Mother B then feel awkward and guilty and arrange to do something with Mother C and the kids without Mother A.

So they do it, and what do you know? They share it on social media, and now Mother A is wondering why she wasn’t invited and then texts both my wife and Mother B a snotty text-message demanding to know why she wasn’t invited, and saying how hurt she is to have been excluded, and so on and so forth.

You think I’m exaggerating? I’ve had three years of it. The politics of millennial mother friendship is more complicated than the frickin’ Cold War. The number of times I’ve had to listen to this prattle, advise my wife on what to write in a text message, tell her to stop obsessing over what someone’s put on Facebook, I’ve wasted weeks!

Had a good time without me, did you? I’m really upset. I was free that afternoon. I could have done with some time-out. I feel like I’m the one always making the effort. I thought we were friends? You’ve made me feel like shit. 

Can you imagine the massive sense of entitlement a person must feel to think that not only are their friends obligated to invite them to any and all social encounters, but they should challenge them if they don’t? I can understand you might be a bit upset if it seems your friends prefer each other to you, but how can any rational, grounded person possibly send a message that pretty much reads, ‘How dare you not invite me?!’ I mean, how big must your ego be to make a statement like that?

I’m hoping this is all the result of hormones and the pressures and strains of parenting – I know first-hand how staying at home with little people can drive you completely insane – because if it’s not, then there’s a hell of a lot of people out there who think friendship comes with chains, with guilt-trips and emotional blackmail to boot. It’s like primary school – ‘You can’t be friends with her!’

So here’s what I’d like to say to all the millennial mothers out there who don’t understand that friendship is voluntary and not an obligation: Grow the hell up! Or at the very least, stop sharing all your comings and goings on social media, because I seriously can’t cope with another three years of this shit.

Children with autism become adults with autism

There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.

  1. Autism is incurable.
  2. Children grow up.
  3. Therefore, children with autism become adults with autism.

I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.

And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!

It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.

Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.

When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.

But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?

Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.

Ever get the feeling you don’t exist?

An Adult With an Autism Diagnosis

Well, it’s here: today my book, ‘An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed‘ is released into the world. You can buy it from Amazon by following one of these links: Amazon UKAmazon US, or from your regular book supplier.

Here is the blurb:

Being diagnosed with autism as an adult can be disorienting and isolating; however, if you can understand the condition and how it affects perceptions, relationships, and your relationship with the world in general, a happy and successful life is attainable. Through an introduction to the autism spectrum, and how the Level 1 diagnosis is characterised, the author draws on personal experiences to provide positive advice on dealing with life, health, and relationships following an adult diagnosis.

The effect of autism on social skills is described with tips for dealing with family and personal relationships, parenting, living arrangements, and employment. Important topics include disclosure, available resources, and options for different therapeutic routes. On reading this book, you will learn a lot more about the autism spectrum at Level 1, be able to separate the facts from the myths, and gain an appreciation of the strengths of autism, and how autism can affect many aspects of everyday life. Drawing from the author’s lived experience, this book is an essential guide for all newly diagnosed adults on the autism spectrum, their families and friends, and all professionals new to working with adults with ASDs.

So, why did I write this book? The short answer is that when I was diagnosed with autism at the age of 28, having only heard of Asperger’s Syndrome and high-functioning autism a year previously, I was sent away without so much as a leaflet to explain what it was, why I had it, how it would affect my life, and why it had taken so long to identify. I had nobody to talk to – nobody knowledgeable, at least – who could help me come to terms with this life-changing news.

Like anybody, I turned to books and the internet. I discovered, much to my dismay, that books on autism seemed to fall into three categories: those for autistic children; those for parents of autistic children; and those for healthcare professionals working in the field. There was very little about adults with the condition and nothing for the many thousands of people diagnosed each year as adults.

The internet was worse. There were dozens of sites, and now hundreds, if not thousands, offering conflicting, confusing, inaccurate, unreliable, opinionated and impenetrable information and advice, often littered with jargon and insider knowledge, with no explanations for the layperson. I therefore struggled to accept the diagnosis, to make sense of where I now found myself, and to understand what any of it meant for my future.

I wrote this book for people who find themselves in a similar situation, a one-stop shop for those newly diagnosed with Asperger’s and ASD Level 1. It is not exhaustive, not ‘the only book on autism you will ever need’, but it contains answers to everything I wanted to know when I was first diagnosed. It is designed to help explain the basics, untangle the jargon, and describe in clear and plain terms how autism might affect the various parts of your life.

If this book can help just one person avoid some of the confusion and grief that I went through upon being diagnosed, if it can help them learn about their condition and be able to see the diagnosis not as an end but as a new beginning, and if it can make them feel not quite so alone in the world, then the effort will have been worth it.

Happy reading!

Gillan Drew