February Tiger Haul

I can’t believe February is almost over, and I hadn’t made it to my local FlyingTiger shop until now. I’ve been pretty housebound all month but I finally managed to get out on my own yesterday. This month’s haul is a bit boring actually, I went for more practical items than usual. Which I present to you without further delay:
[image shows, clockwise from left: bag of blue and white striped lint rollers for all the dog hair covering my clothes, a blue notebook as I can’t stop buying any candidates for bullet journals that I see, a French nougat chocolate bar, two glue sticks, two erasers, a roll of glitttery silver elastic band just because it’s pretty, four packs of seeds as it’s spring: cornflowers, wild rocket, sweet peas and zinnias, a bag of bag clips for using in the kitchen, two bars of rose soap, a six pack of fake moustaches for DD’s moustache obsession, and two packs of popping candy for fun.]


Ok, maybe some items aren’t as boring as I’d thought! But seriously, who can resist fake moustaches or popping candy? 

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Phonecalls while autistic. 

Today I had a bit of a meltdown. To be honest, I’m still in the middle of it. But because writing usually helps calm me down, I’m hoping writing about why it happened may help. It all happened because I need to make a phonecall. 

Yup, a simple phonecall. 

To a government agency. On behalf of my kids. I won’t say more about why I need to make it as I don’t like writing too much about my kids. But I’m afraid it’s one I need to make and it’s not going to go away. 

How I know about it is that I asked a question on a Facebook support group for Ehlers Danlos Syndrome, and was given this phone number. And assured that the person I needed to call would be sympathetic. That they would understand, and that I would receive the help I need. 

The last time I phoned a government official, also seeking help with my kids, also to a ‘lovely’ person who was ‘understanding’ I got ( in my mind maybe, or through a miscommunication) screamed at.  Ok, maybe not screamed. But she definitely raised her voice. 

Maybe that experience has influenced how I’m reacting today. Or maybe if I’d never had that interaction, it wouldn’t have mattered. 

Because phone calls freak me out. Not so much receiving them, though that’s also hard. But making them. Picking up the phone. Especially if it’s important. And especially if it’s someone I’ve never phoned before. 

I can now actually phone to make an order from my local Chinese takeaway (literally behind my house) without breaking out in a sweat. Because we always order the exact same things. And I can order coal. Again, exact same order every month. I know the words to use, I’ve used them before. I have a script. 

But phoning people for the first time, or to discuss something different to usual is so much harder. I do prepare a script. Not written down, but I go over ‘my end of the conversation’, over and over in my mind till I’m sure of what I need to say. The same way I do when I have a face-to-face meeting. 

But it’s so much harder than face to face. I find it hard to understand what people are saying. I’m not hard of hearing, but often need to ask them to repeat themselves. I also apparently have a ‘funny’ accent. I’ve been mistaken for a child pulling a prank. 

But it’s more than that. It’s a weird type of dread that I can’t even explain. 

So, I’m sitting here crying because I can’t make a simple phonecall. 

And wishing more government agencies, more doctors, more school staff, had and responded to emails. Or texts. Or online forms. Or ‘instant chat’. These forms of communication have made my life so much easier when it comes to interacting with customer service from various private companies. Why can’t public services follow suit. 

Why, oh why, are there not more options? 

Feeling a bit better. But still can’t make that damn phonecall. 

Will try again later. 
[image of a black icon depicting a telephone handle, with black concave lines eminating from it to represent sound waves.]

70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post)

Reblogging this, not only because one of my posts is mentioned, but also because I’m really looking forward to reading the other 69 posts mentioned!

 

In the very first post on this blog and on my currently-pinned Twitter tweet, I state that “The Silent Wave”, on a grander scale, is not about me; it’s about all of us (especially…

Source: 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post)

My thoughts on Self-Diagnosis

This post is in danger of being a long and rambling one, but I do feel it’s a topic I need to write about. Goodness knows I’ve been thinking of it quite a lot! 

#SelfDxIsValid is a hashtag started on Twitter about a year ago, and although I was not on twitter upon its inception, I quickly embraced it when I became aware of it. It took me a little longer to become aware that it was a controversial hashtag. That happened when I encountered aggression and vitriol as a result of using it. And what upset me the most was that, apart from one or two professionals, most of those opposed to it were ‘Officially Diagnosed’ Autistics. They seemed not only very possessive of their label, and some displayed a worrying amount of ableism and self-hate, but also showed very strong black-and-white thinking. I bear no ill will towards these people as I genuinely don’t think they realise the harm they are doing. 

Because, getting an autism diagnosis is actually a very grey area. Yes, there are ‘official criteria’ but these are very much up to clinical interpretation, and often different tests are conducted by different professionals, reflecting both their own biases and also those of the country or area they are in. For example, my son was diagnosed by a multi-disciplinary team who were very much into ticking boxes, and conducting a gruelling battery of tests. And in a way that’s what they needed to do as it later became clear to me that they were fresh out of college and very inexperienced. My daughter got her diagnosis from the leading child psychiatrist in the country, who has written many books on autism, has over forty years of experience and is rumoured to be autistic himself. He was able to diagnose her in a much quicker and more efficient manner, using different tests but following the same criteria. He also relied on his experience and picked up on nuances others may have missed, as my daughter’s autism presents in a more atypical manner that doesn’t fit into many of the usual boxes. If she had been seen by those who diagnosed my son, she could have easily been denied a diagnosis. Yet she would have been no less autistic. 

And that’s diagnosing autistic children. When I enquired about diagnosing adults, I was told that there were no professionals in my area who could do that through the public health system, and given a short list of private practices, mostly on the other side of the country. And this is where more of the ‘not just black-or-white’ nuance about getting a diagnosis comes in. There are some people who say that self-diagnosed autistics should ‘just go get a diagnosis if you’re so convinced you’re autistic’. They do not take into account the many factors that might go against this. My husband and I have discussed whether or not I should seek an official diagnosis. And have decided against it. Here are some of our reasons:

Travel: as I’ve mentioned, most of those who diagnose autistic adults are based on the other side of the country. My various health issues, my car sickness, my anxiety and panic attacks while travelling, mean that practically the only time I go on long car rides is if I’m going to an airport, where it’s part of a much longer ordeal of getting somewhere and can’t be avoided. Even if I were to manage it, I would not arrive at a clinic in any fit shape to be tested for anything. 

Anxiety around Professionals: over the past few years, I have seen countless medical professionals and also a few psychologists. And I have been dismissed and treated badly by many of them. So I have now developed an intense anxiety around them. So, I’m afraid even if I did manage to travel to see someone, I may clam up and be unable to answer their questions truthfully, if at all. Especially if I dont trust them or we don’t ‘click’. 

Cost: obviously, seeing as I can’t seem to be able to access public services for this, I will have to pay for private assessment. I’ve heard that it can cost thousands of euro. Plus I would need to stay in a hotel overnight as I can’t manage day-trips. And I’d need to hire someone to look after the kids if my husband is away with work, which he is a lot these days. 

Family disruption: speaking of the kids, they rely on me a lot in all sorts of ways, and get very upset if someone else is looking after them. And I’ve only ever spent one night away from them, and that time my sister looked after them but she won’t be able to do  that so easily anymore as her own children are enough for her to handle. 

Lack of access to services: both my children have official autism diagnoses. And even with those, they have hardly any access to services, due to cutbacks. And as to services for adults, they are non-existent except maybe for young adults accessing supports in university or with employment. And if I did need accommodation with employment, I could get that with my Ehlers Danlos diagnosis. The same goes for disability benefit, which I’m not entitled to anyway as my husband earns over the income threshold. So, there is absolutely no ‘official’ benefit to an ‘official’ autism diagnosis for me. 

And I think maybe the word ‘diagnosis’ in ‘self-diagnosis’ is what is problematic. I do not feel I am ‘diagnosing’ myself when I say I am autistic. I am merely stating what I have observed and the conclusion I have come to. Initially, during the testing of my son and then my daughter, I realised that every answer I gave the professional about them was equally applicable to me. I had also at this time started reading up on autism. And had become ‘obsessed’ with reading about it! I started by reading books by ‘professionals’, and though so much of it made sense to me, it was when I started reading books by autistics themselves that I saw myself written down on paper. I then started reading their blogs, and finally interacting with them on Twitter. I talked to my (few) friends and family and they all agreed with me. This was not some five minute online questionnaire that I scored highly on. Though I did also take every single one of those I could find, and did score very highly on every one of them. And so, there is no doubt in my mind that I’m autistic. But I don’t like the term ‘diagnosis’ and think diagnosing autism is a flawed system for reasons I’ve explained earlier, and so prefer the term ‘self-identification’. But seeing the ‘self-dx’ hashtag exists and is widely used then I usually go with that. 

And what does this ‘self-diagnosis’ get me? 

It gives me a sense of self: I’ve always been aware that I was different from my peers, and knowing I’m autistic has helped me to explain why. It’s given me self-confidence and provided strategies for dealing with life that work better than anything I’ve tried before. It has helped me be unafraid and unashamed to be myself. And my life is immensely better as a result. 

It gives me a sense of community: when I first realised I was autistic, I tentatively reached out to the autistic community, first on Facebook and later on Twitter. To my utter surprise, they welcomed me with open arms. This was the first time in my life I was able to connect with strangers in any meaningful way. They offered me support and encouragement and have gone wonders for my mental health. I am forever grateful to them. 

It gives me a sense of purpose: I have never felt there was much meaning to my life. I suppose when my kids came along this was less true. But I never felt there was much else apart from them that I could fight for or advocate for. But watching autistic self-advocates has opened my eyes and made me aware of what I can achieve in my own little way. For example, I started this blog and do think it has helped a few people. And again that has gone wonders for my mental health. It’s all connected. 

So, what are the problems with self-diagnosis? For some autistics, they feel the need for validation that only an official diagnosis gives them. I feel no such need. I trust my own judgement, especially as I’ve done so much research. At the same time, I don’t go around telling people I’m autistic. But I think that would be the same even if I had an official diagnosis!

Are there people who self-diagnose but are not actually autistic? Sure. Some may have other neurodivergent conditions that overlap with autism, like OCD or ADHD. Some might have mental health issues like Bipolar Disorder or Borderline Personality Disorder and might benefit from a professional diagnosis. There may be those (rare I think) who are claiming to be autistic just to feel special or look for attention. There may be those (rarer I think) who seek to make money out of their diagnosis. But in my opinion these are few and far between. And even those who wrongly diagnose themselves, if they benefit from interacting with the autistic community, then I feel they should be welcome too. Because ultimately the autistic community I have encountered is all about support, about friendship and a deep sense of connection. And I don’t think that should change based on what may be written on a piece of headed paper. 

Pathological Demand Avoidance (PDA)

I first came across the term PDA a few years ago, when I was researching various forms of autism. There was a documentary made on it, called ‘Born Naughty’, but I didn’t actually watch it, as neither of my kids were ‘naughty’ and didn’t seem to have any of the aggressive behaviour depicted in the trailer. I think I also got confused with Oppositional Defiant Disorder (ODD) and assumed they were both the same thing. And my kids were not like that. Or so I thought. So I moved on, and didn’t give PDA any further thought. 

My son is diagnosed with ASD, and the ‘Aspergers’ subtype fits him like a glove. And while he has many challenges and difficulties with certain aspects of daily life, he is on the whole a happy chap. 

My daughter is also diagnosed with ASD. And while officially she too is of the ‘Aspergers’ subtype, I’ve never felt it to be a great fit. I assumed that this was because of the ‘female presentation’ aspect. (Though I really hate that term, as there are plenty of males and non-binary people whose autism presents in that manner.) But there were also elements that did not seem to be described very much in anything I read: the extreme mood swings (different from meltdowns), the manipulative nature, the having to do everything on her own terms, and the inability to comply with what seem to be very simple demands. 

And then, I can’t remember how or why, the term PDA re-entered my consciousness. I came across The PDA Resource website and also the diagnostic criteria , and something just ‘clicked’ in my mind. Here was something that fit my daughter to a T. (Apart from the language delay, which is actually a debated part of the criteria as it seems many PDAers don’t have it.) And as I read more and more, blogs and books and comments from parents in support group forums, I realised that it also described me as a child. I still have many of the features, but have developed coping mechanisms over the years so they are not so obvious anymore. (I always did say my daughter is like a ‘mini-me’!)

I’m not sure PDA is something that is very recognised in Ireland at the moment, though it’s recognition in the UK is increasing, and where the UK goes, Ireland usually follows. So at the moment, I’m ok with my daughter having a general ASD diagnosis. But knowing about the condition helps me develop better strategies for helping her, and for explaining some of her difficulties to her teachers. 

I’m really glad I stumbled upon PDA, and I’ve no doubt I’ll be writing a lot more about it in the future. 
[image of a light blue background, with the words ‘Pathological Demand Avoidance’ in capital letters in black.]