Everything Changed For Me This Year (Autism Awareness Day)

Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.

For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.

But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).

(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)

  • I was diagnosed with Depression and Anxiety by one psychiatrist.
  • I was diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD) by my long term psychiatrist.
  • I was diagnosed with Autism Spectrum Disorder and had the BPD diagnosis confirmed at the local Neurobehavioral Unit.
  • My therapist explained that my mental health issues, particularly my BPD, may have stemmed from the continued invalidation of my ASD.
  • A few years passed.
  • After a discussion with my psychiatrist, my mental health related diagnoses were updated, changing to Treatment Resistant Depression (TRD), Generalised Anxiety Disorder (GAD), and BPD.
  • I was (re-)diagnosed with OCD after further sessions with my psychiatrist.
  • My GP diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) when we could find no obvious cause for Chronic Fatigue I’ve been dealing with since I was twelve.
  • A couple of years passed.
  • I started to develop Chronic Pain that got dramatically worse over a period of several months.
  • I was referred to a specialist who diagnosed me with Hypermobility (apparently individuals with Hypermobility are seven times more likely to be autistic), which led to a diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS), explaining my Chronic Fatigue and Chronic Pain as well as a number of other ‘smaller’ symptoms that, due to the bigger problems, had been ignored. This, as far as I can tell, makes the ME/CFS diagnosis void.
  • I was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), many of the symptoms overlapping with my ASD, during the same period.

And suddenly all of the pieces started to click together:

THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.

MY ASD AND HYPERMOBILITY ARE LINKED.

THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.

Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.

Parenting a Young Adult With Autism Spectrum Disorder: I Interview My Mum

Since this is my blog, the experiences are predominately from my point of view but I thought it would be really useful, as well as interesting, to get a different perspective on the same scenario. So, with that in mind plus the fact that most resources are aimed at the parents of young autistic children, I asked my Mum if I could interview her about what it’s like to be the parent and often advocate for a young adult with Autism Spectrum Disorder. I came up with a list of questions and she answered them. I had almost no input on her answers, only to ask for more information or detail if I thought she hadn’t fully answered the question or finished a thought. We’re hopeful that this could be of some help to parents with adult children managing a form of Autism.


I’ve talked about what it was like for me to get a late diagnosis but what was that experience like for you?

The process of getting a diagnosis for you was frustrating at best and distressing at worst. You were very clear about your need to know the causes of your difficulties and so refusal from medical professionals to engage with that need was hard to witness. I needed to do the research, follow up possible assessments and/or therapies and talk about your challenges against a backdrop of suspicion of being overprotective and a distrust of my motives. Even when it became clear that your inability to talk for yourself at the outset was a result of Selective Mutism and your experience with those professionals, I was still met with a resistance to engage with me on your behalf.

Although I’m more able to speak for myself now, what has it been like having to do so much advocating for me?

It always felt like it was my role to do this until you were able to do it for yourself. I wasn’t trying to fix things, just get your voice heard, your experience understood so that the problems you were facing could be addressed and the right support provided.

I knew all the answers to questions you were being asked because we’d talked about it all beforehand. Both before and after your diagnosis, it has just felt like I can be the means to you being heard and hopefully understood as and when you are not able to do it yourself.

As in your first question, this doesn’t always work! And I do often feel frustrated by a refusal to accept my intentions, confusing it with a reluctance to ‘allow’ you to speak for yourself/become independent.

Knowing me but having an outside perspective, what would you consider to be the positives and negatives of having Autism Spectrum Disorder?

This is really difficult for me as all I see is YOU, with all your qualities and all your challenges. Combine this with the fact that each person with ASD presents so differently and I do find it difficult to generalise. Understanding more about women on the spectrum now, I see your very singular focus on anything you set out to do as a positive. I think your intense empathy is a double bind, giving you a compassion that can then often be overwhelming. The biggest negative I see is your level of anxiety. This is often debilitating and always massively exhausting and affects most aspects of your life.

How do you think things would’ve been different if my ASD had been recognised when I was younger?

This is a little easier to answer as I think, from all I see now, knowing about it earlier may have enabled us to access support for you and given you access to specialist resources. Having said that, I wonder if a diagnosis earlier might have ended up giving you a label that meant expectations, both your own and society’s, may have been different for you. Increased awareness of and understanding surrounding neurodiversity is relatively recent.

What do you think is the most important skill or trait when it comes to parenting a young adult with ASD?

This question makes me want to ask you what you feel has been most important but my sense is that being there for you, trying to put aside any preconceptions and opinions of my own so that I am able to really listen and hear what you are telling me, leave aside any of my own anxieties or fears, to support and encourage you to do what you want to do; a combination of protection when things are tough and support to push forward when you feel able.

I also feel it has been important to be prepared to read and research for myself and learn all about the condition so I can share this whenever it feels necessary to inform the argument for support. And to be prepared to persist when first attempts are met with a negative response.

I’ve often talked about feeling like a burden for not moving out or contributing more as a young adult. What are your thoughts on this?

In answering this, I would like to reference a quote here, which I think explains how I feel about this. I found this during one of my searches and thought it was a positive recognition of the difference I see and how it affects your life in the sense of the ‘what’ and ‘how’ you contribute and participate. Keri Opai, a Mental Health Service Award Winner in New Zealand, consulted the Maori disabled community in order to develop variants in language that differ from what he called the “sometimes condescending English terms,” and instead emphasised the ‘gaining [of] strength and ability.’ So the word for ‘disabled’ itself is ‘whaikaha,’ which means to “have strength or to be differently able.” He also spoke of people with autism having ‘their own timing, spacing, pacing and life-rhythm’ and so interpreted autism as ‘takiwatanga,’ meaning ‘in his or her own time and space.’ (Te Reo Hapai, the Language of Enrichment by Keri Opai)

I do understand that you feel this way though but I know that you do what you can when you can, and that this inevitably fluctuates according to what you have going on at any particular time. With the anxiety and fatigue you experience on a daily basis, and your focus being studying at the moment, it just doesn’t make sense that you do more than you are able to, nor that you would move out to live independently, with all the extra demands that would make on you, yet. There is plenty of time ahead for that. Until then, I get to enjoy your company and give you the support you need.

I’ve been taking various medications and going to different forms of therapy for years now. What do you think have been the effects of those, positive and negative?

I have always felt that it would be a combination of therapy and medication that would be likely to be the best way forward, and I think we both agree now that this has been the case. It was challenging to find a therapist that you felt able to work with but once we did, we knew instantly that you could start moving forward, in your own time and in whatever way felt possible, something your therapist has always supported.

Regarding medications, I do have concerns about their effects on you physically as well as mentally and appreciate that living together does mean I can help monitor these effects and see patterns and changes that maybe you can’t.

What do you think the hardest part of living with ASD is? 

Again, looking at you, I would say that the hardest part for you, of living with ASD, is the sense of feeling different and feeling left behind your peers; and watching you being so exhausted by managing the mental health issues that have troubled you as a result of the late diagnosis.

Do you feel your life is different because I’m autistic?

Yes, my life is different to what I had expected it would be at this point, but then so is yours. But we deal with that, and make it the best we can, for both of us.

What has been or is the hardest part of parenting a young adult with ASD?

I have often felt very isolated, and criticised for continuing to be your voice when you are not able to speak. And I do worry about the barriers you may face in a world that does not always recognise the assets and abilities of neurodiverse people, expecting autistic people to change rather than have society change the many inhospitable or incompatible environments and expectations that may hinder them.

What help/advice would have been helpful to you at any point?

All the way through… someone willing to believe in my intentions and acknowledge that, I, as a parent, only have your best interests at the core of everything I do.


So hopefully her responses to these questions have been helpful or reassuring to the parents among you guys. During this process, she actually realised that she had questions for me so we decided to do the same thing in reverse and that post will be up tomorrow!