Assessment and support services for people with ADHD

Submissions to the Australian government inquiry are still being accepted as they’ve had a problem with the website. I’ve edited it a bit to take some details out. We could add this post to the others in about me living with ADHD and not getting a diagnosis till my late 40s. The first post in that series is Returning to self.

Thank you for the opportunity to make a submission to the Inquiry. I will concentrate my response on the following Terms of Reference:

  • (a) adequacy of access to ADHD diagnosis;
  • (b) adequacy of access to supports after an ADHD assessment;
  • (d) impact of gender bias in ADHD assessment, support services and research;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (e) access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
  • (f) the role of the National Disability Insurance Scheme in supporting people with ADHD, with particular emphasis on the scheme’s responsibility to recognise ADHD as a primary disability;

My husband and I are parents to an 11-year-old boy, A, who was diagnosed with ADHD in September 2017. However, to access support from the NDIA, A’s diagnosis was revised in September 2019 to: “Autism Spectrum Disorder Level 2, with speech and language delays, and ADHD”.

The two diagnoses cause different issues and require different management, but had they been listed as ADHD first, we were told we would be ineligible for NDIS funding – by the NDIA coordinator when we initially sought funding, by the paediatrician and by the psychologist. To get these updated reports, we paid for psychologist, speech pathology and paediatric testing; and their respective report writing time, twice in three years.

It is impossible to comment on the inquiry without referring to A’s schooling, even if support for A is supposed to come from his school, not the NDIA. I think the NDIA forget that for children at school, they need wrap-around support. For that reason, I will be addressing it through (b) adequacy of access to supports after an ADHD assessment.

In February of 2023, (A is now in Grade 6), we had another cost of meeting with a different Educational Psychologist for further testing. This was to re-confirm the adjustments and modifications already noted in his Individual Learning Plans and term/ final reports from Grade 3 onwards. This information, nor are the details we have on file with the NDIA, are enough to support A through to Grade 12. Also, for these tests to be completed in February 2023, I had to book in November 2022.

Over the course of the testing in February, it was identified that A lives with Dyslexia and Dysgraphia. Unfortunately, because A can articulate well and doesn’t have a low IQ, he is not suitable for a Vineland test to unlock funding for him for a dedicated key worker at school. Notwithstanding this, he is unable to complete most tasks without either support, reminders, or additional time. His measured output continues to be low; he’s testing around 18 months behind his peers with reading and writing skills.

A will not get nominated for ‘excellence’ awards, nor reading prizes, as his brain simply does not work in the way they’re judged. He’s scattered, constantly forgetting things, will drift off in the middle of lessons and when he gets home from school, he’s basically fried. He’s physically unable to do anything other than decompress after the day. Homework is an ongoing battle for him, he’s simply too tired to complete even the simplest of tasks, including reading for 15 minutes. He’s constantly comparing himself to the children in his class and why they’re reading chapter books; what was identified as him self-regulating at Kinder by turning his back on the room and looking through books, has disappeared into anxiety and comparison. His tiredness at the end of each day also has a knock-on effect into team sports. Instead of being a thing to enjoy, A sees them as a challenge that he has to ‘mask’ at. Often getting overwhelmed with people not being ‘ADHD aware’ shouting at him. He doesn’t understand they’re encouraging him; he only hears the noise.

We’re grateful to have adjustments in place for minimising work given and extending his time to do it at school; but when he’s exhausted, not completing his homework will only get harder for him when he gets to high school. Also, as his parents, we run the gauntlet as being perceived as in the wrong, when we allow him to rest.

We did not put him through NAPLAN, because he gets stressed and overwhelmed being in a testing scenario. During the practice tests last year, he enjoyed the novelty of the first 15 minutes; started getting worried in the middle 15 minutes; and was so distressed in the last 15 minutes he was disruptive for the other children in his class. He could see other children answering questions around him that he either didn’t know the answers to, or had no concept to work from. With ADHD, he was also getting frustrated at having to answer similar questions repeatedly.

When A arrived in Grade 4 to [this school], (term 2 2021), he was met with a teacher that gave all the children flash cards in his classroom, if they needed a movement, meal, stretch, quiet or whatever break – they were able to pass a card to him. No questions asked. Consequently, the children felt listened to and understood, all of them were able to relax and learn into their learning. Each of the classroom areas have their own little library, a communal area and a ‘donut’ room which is quiet, relaxing and filled with cushions.

In Grade 5 and 6, A has had the same teacher, she also allows the children to take breaks when required. In this last year of his primary school, instead of being excused to the quiet room, the children are expected to manage themselves in the classroom. Upskilling them gently to manage themselves when they get to high school.

We continue to be grateful for the teachers and staff at his current school. This is 180° away from A’s Grade 2 teacher’s attitude. Not least because he ‘didn’t believe in ADHD’. We met with this teacher before term 1 to open a dialogue, take him through A’s diagnosis, and how to manage A’s overwhelm, as he was beginning to recognise his limitations compared to his peers.

This teacher would manage the children in his class only by punitive measures; as an example, sending them out to litter-pick on break times. We had a phone call home from him on the first day of term 1, saying he found A obstructive, rude, and defiant, he was requesting a meeting to discuss his behaviour. When we tried to explain that our son was shutting down due to overwhelm, that he was not being disrespectful or disengaged, we were told that it was his classroom, and he would manage it how he saw fit.

A sees a psychologist fortnightly. Just last month as a session, he mentioned he was sad about something at school, that had reminded him of, “When I was in Mr X’s class”.

We have to fight every step of the way to find support for A. Even with NDIS funding theoretically meaning that we do not need a referral to access allied health, we still rely on a spot becoming vacant from wait lists. I called around paediatrician, speech pathology and occupational therapy clinics weekly from our arrival in Ballarat in March 2022. It took 2 years to find a paediatrician who had room to see us, meanwhile we relied on our paediatrician in Eltham to support the family through telehealth. When we’d found the paediatrician, I had to pay to see our GP for a referral for A. We were booked into a speech pathologist in term 2 of this year, again I had to get a referral from our GP to meet with them. We’ve still not found an occupational therapist. These referrals only last 12 months.

The NDIS Plan we have is self-managed. However, the support budgets are ring-fenced, so if I don’t select the correct line code, a claim is rejected. We do not get a notification of it being rejected; we just notice we’re short in our bank. I must log in again and view payment requests to see what’s going on.

To make matters more confusing, when you claim, each of the five support categories have the same number next to them, including two support categories that aren’t in A’s plan. Despite not being able to access allied health support for over two years; the money we had in the plan was absorbed into a new plan in November 2022, not rolled over.

We need to purchase an iPad for A to assist with his reading and writing, with access to talk-to-type programs and has books read to him. This has been recommended by his teacher, his psychologist, the education psychologist, and his speech pathologist twice this year. However, as we used his $500 budget line for consumables already, the purchasing of it has not happened.

I put the same request in again late last week, I’m hoping this time I can convince someone at the NDIA that this is a requirement for A. That they will release some of the money from his support services budget line, money that we’re not using as we can’t find all the therapists he needs. Instead of the NDIA providing what we ask for, we’re going backwards and forwards justifying what we’re asking for. We’re doing all we can to prepare him for transitioning to high school, but the one tool he needs to unlock his world and assist him has been refused. There is currently over $5,000 to ‘improve his daily living’ sitting there that I can’t claim against, because the iPad is considered a consumable item. I could put a bill in for 10 sessions of a therapy to release the funds to buy the iPad. Then if I am audited, I could be prosecuted for fraud.

The ADHD gap for A is growing wider, when early intervention demonstrates it costs society less long-term in support and funding. A is capable of being a bright and engaged part of society, but how the school system is set up is not suitable for neurodiverse children. If children don’t fit into the standard box of sit down, be quiet, learn facts, regurgitate them in exams, they’re not going to succeed.

A loves building models with his dad, he’s won competitions for the dioramas he’s built from kits. He makes resin trays for family and friends. He goes down YouTube worm holes like every other 11-year-old, in some respects, he’s perfectly normal. But he’s already showing signs of anxiety and depression, not understanding why when he talks to people he’s articulate, empathetic, hilarious, kind-hearted and quick-witted. But when sits down to write, he struggles. It’s physically harder for him to write because he will get into an overwhelm or frustration ‘holding pattern’, knowing that what he wants to say, but his brain goes quicker than his fingers can keep up. The NDIA wouldn’t release his funds to support him. The measures he’s held against at school do not allow for children who see and move through the world differently.

The past seven years of advocating for A lead to me pursuing a diagnosis for myself. I was tested in February 2023, diagnosed in March and only found a psychiatrist to potentially prescribe me medication in May. It’s now June, I’m still waiting on the medication being prescribed.

There is no practice in Ballarat that would meet me after the independent testing I’d had done. In total, I sent over 20 email requests to different practices. Some didn’t bother to reply, some told me there was no room, but mostly I was told they would not accept independent ADHD diagnosis; they all wanted to re-test me from their rooms. This is ridiculous, when I spent over $1,000 and it took two days to complete. It is not just a waste of money for patients, but is putting more strain on an already exhausted system and people.

I am now seeing a psychiatrist in NSW, via telehealth, that found online. But only after all the paperwork I’d sent to the psychiatrist had been reviewed, was I accepted into their practice. I then had to pay to see my GP for to get a referral, as you can’t self-refer for ADHD. This paperwork was sent off, but a month later, I then had to pay my GP again to get a physical completed; despite me giving access to my entire medical history to the psychiatrist.

I’ve been labelled erratic, inconsistent, flighty, temperamental, irrational or lazy for my entire life. For over 40 years I’ve struggled to fulfil or fit into what has been expected of me, often forcing myself to push through when I should have rested. I’ve been misdiagnosed with depression, anxiety, PTSD, Body Dysmorphia, suicidal ideation. It is soul-destroying to discover what you thought were your personality traits, are actually diagnostic markers. When you couldn’t find explanations to why you would feel so adrift, but couldn’t articulate why. Or not to be able to ‘cope’ with life as well as you should be able to, from one day to another. Why you would consistently fail to meet expectations of yourself, or others, including employers.

I do not want this for our son. Yet, the past seven years have shown me that despite his diagnosis, he will be left behind. The support systems we rely on are so fractured and disparate, no agency talks to another agency – they rely on the parents advocating for their children. My husband and I both work full time, but we still can’t afford all the supports for A, we rely on the NDIS to support us to support our son.

We cannot afford for his fortnightly visits to a psychologist. We cannot afford his speech pathology. If we ever find an occupational therapist, we cannot afford to pay for that either. Our NDIS plan is just enough to cover these therapies for the year. We both work full time in the Victorian Public Sector; what about the families in Australia that are working three or four jobs to make ends meet? You are not going to hear from them, because they’re just about scraping through.

To complete the submission to this Inquiry, I tried to calculate how much it has cost us to date to get a diagnosis and support. When I reached $30,000 in doctors and testing fees, I stopped counting. Not least because we’ve paid for the same tests three times now. His prescription costs us around $384 a year. We’ve changed our diet as a family, cooking as much as we can from scratch and avoiding pre-packaged food. Like many families we’re seeing grocery bills get more expensive each time we shop. We also spend nearly $200 a month on supplements; a specific Omega compound, with a higher DHA than we can find on the high street, Ashwagandha, Rhodiola, L-Tyrosine and Melatonin. This is paying off as he forgot his medication last week and coped at school instead of having a meltdown, but it all adds up.

I would like to meet the people at the NDIA who reject claims for support or equipment as too expensive. Instead, please start accepting that therapists and specialists who are more qualified and know the clients they’ve assessed, do understand what their clients need! The iPad we want to get for A to assist him is around $700. I have been working on this submission off and on for a month. I’ve spent more than $700 of my time reviewing our paperwork, researching this submission and writing it.

Thank you for reading.

On Writing

Hello, have another random thought dump. unedited, foibles, mixed tenses and all x

I’ve written for as long as I can remember. Mum on her last visit from the UK to Australia brought out some poetry I’d written at infant and junior school. I’ll dig it out and share it for you, it’s very cute.

I journal most mornings, I aim for 5 out of 7 days a week. Some journal entries I keep. Others, I burn.

I carry a pad and pen around with me. If I’ve got a bag, I’m also likely to have another pad and my diary with me, just in case.

I buy new notepads, notebooks, pens in volume – trying to get all the feelings out my head into words. It’s noisy up there. And messy. Convinced each time, that this new fresh set of blank pages will help.

Reader, it doesn’t.

I’ve written myself out of holes, written myself into corners. I still love the smell of fresh note paper. Inhaling the smell of the glue as I open a notebook for the first time.

I’ve been converting One Last Hundred Chances into a screenplay. The formatting is completely different to how I’ve written before, but as I pull out the descriptions and rely on the words to tell the story, the images dance behind my eyes.

When I get to Gildredge Park in the book, I remember the times we went there as children.

The hills we’d roll down over and over. Endless picnics with one set of grandparents, it was also close to where Mum worked, so we’d meet her there for lunch sometimes. We’d walk around the mini-art gallery if it got too hot, go and visit exhibitions on rainy Sunday afternoons. I can still smell the parquet floors, sadly the original building left to the town is now being left to ruin after being sold off. With the collection moved to a building next to the concrete monstrosity that is the Congress Theatre.

[An aside, Art Garfunkel played at the Congress in 2003. During sound check, he complained about the acoustics, and was told to wait until the crowd came in. He still wasn’t happy when he started the show. His fury made the local paper, because you’d think he’d know what he was talking about].

[Another aside, if you brought a package holiday to Eastbourne during the summer, it would include coach travel down from where you live, (bunging up the sea front for us locals as you were unloaded), a weeks’ bed and board and a theatre package. Total pot-luck as depending on what week you arrived, would dictate what you would see at the theatres (plural, it had three, all of which would put on a pantomime each Christmas, the aforementioned Congress, Devonshire Park and Royal Hippodrome. Eastbourne also had 5 or 6 cinemas at one point too. I digress).

Sometimes it would be a repertory group on tour, other times it’d be previews for the West End. Other times, it’d be a full-on touring production of a musical direct from the West End. Mum and I watched Copacabana, several Sondheim’s, a couple of Andrew Lloyd Weber’s and most memorably, The Rocky Horror Picture Show.

Nicholas Parsons was the narrator, Jonathan Wilkes was Frank. All the Transylvanians were the ushers, guiding people to their seats with their torches (euphemism). The lights went down to a packed house, elderly ladies with handbags on their knees. They were happy to be seeing Nicholas Parsons, but a bit bemused that a lot of the the audience were dressed in scrubs with pearls and rubber gloves, or in hot pants and lingerie. If you’ve seen it live, you know how it goes:

  • Brad – b@stard
  • Janet – b!tch
  • Water pistols, rice, newspapers, doing the Time Warp, the whole shebang

Lights up at the interval, half the audience had left.]

I remember visiting the park after the huge storm in 1987, seeing the trees that had been skittled in the winds. Trees we’d sat under and against, trees we counted to 100 while leaning on their trunks.

I remember climbing around and along the walls of the park, a gang of kids, best friends for the day and for as long as we played. Walking through the shades of the trees to the playground, hearing the thwack of tennis balls on hard, grey, asphalt courts that burned your feet when you ran over them. Looking at the robins, squirrels and quietly enjoying carefully curated gardens and walkways, with secret benches under arbours.

The hot day that instead of an ice cream, I convinced Nanny to buy me a bottle of Perrier, as I knew I’d like it. I’d seen how enthusiastically people were drinking it on the adverts. I felt so grown-up and sophisticated when I drank it. I remember the acerbic taste, but valiantly finishing the green bottle. If it’s any consolation; I still don’t like it, but love other sparkling water.

I remember the poodles I saw at one gate, like Matryoshka dolls, matching tartan jackets on a cold day. They ended up in the book. I think I will always get asked how much of it is autobiographical. I think I will always reply, the Eastbourne bits. Here’s the fishpond for you, at the top of Gildredge Park. It’s smaller than I remembered.

A picture of the fishpond at Gildredge Park in Eastbourne. It looks like autumn, as the leaves are starting to turn on the trees. It also looks smaller than I remember.

Photo credit

One day, instead of walking from home to the train station to get to college in Lewes, I spent the day in the park instead. I knew I simply couldn’t get to college. At the time, I didn’t know if I was depressed, anxious or what; but Mum kicked me out the house and told me to get going. I played truant a lot from school and college, I’d just have to leave, not knowing what else to do. I know now, it’s classic ADHD overwhelm.

That day, I stopped at the station, and brought a new note pad from WH Smiths. I walked up to the park. At a guess, it was winter 1993.

That was the day I saw the poodles.

I sat on a picnic bench and started writing in my fresh new notebook. I remember my hands were cold, as every so often I’d need to sit on them to warm them up.

I remembered that day while I was on a course last week. I don’t know why it came into my head; during a break, in amongst the scribbled flowers, alphabets and doodles, I was again sitting at the bench, missing college. As clear as it is I’m typing this now. I remembered that when all else failed me, I brought a book and wrote it out. It’s what I’ve turned to time and again, that to order my brain, I can’t just rely on thinking things through. As I said, it’s noisy up there.

I had a little moment in a blue stone basement in Ballarat for the teenager I was. I’ve been referred to a psychiatrist so I can be prescribed medication for ADHD. She’s in Sydney, but there are no practices here with room to take me and I need another layer of support above what I’m already doing.

I’m 48 years old, I’m only just learning that I can’t do all the things. Or if I do the things, I pay a cost somewhere else. If I push too hard; I’ll be in bed by 7pm, or for most of the weekend. If I do too much, I won’t feel able to meet with my friends and family.

If I pace myself, make sure I rest, eat well, avoid social media and the news, I can do some of the things.

If I leave the house 9-5 for five days like I did last week, I will need a day or so to recuperate afterwards. I pre-planned this, but on my leave days Monday and Wednesday (ANZAC Day on Tuesday), I slept more instead of doing the things I thought I’d be able to do.

I guess what I’m saying is, when I need to stop, slow down and reconcile what is going on, I write. Sometimes those thoughts filed away will arrive in a book, written 30 years later.

On being a lighthouse

A blue lighthouse line drawing on a lighter blue background. In cream writing it says "If I can, you can too."

you will not always know the power of your words or actions.

but someone out there will see you, and know how hard you’re trying.

when you show up every day, you will let other people know it can be done.

a friend will check in on you, asking for advice or to cheer you on.

by showing up every day, you stand tall and light the way for others.

don’t give up. rest. start over. especially if you don’t feel like it.

showing up every day? it matters, and more than you know.

I got an email this morning, from someone I used to work with years ago. Before I moved to Australia, that amount of years ago. They wanted to let me know they’d finally read my book. It had been on their bookshelf for a while, but this Easter weekend, they picked it up and read it.

In one sitting.

They were excited to see that I was converting One Last Hundred Chances into a screenplay. They reminded me of how hard I’d worked while going through my messy divorce, they told me they were proud. They were excited for me and how my life had changed.

I slept really badly last night, I didn’t get to the gym. I slept in. I then sat up in bed and journaled. I wrote this.

In case you can’t read my writing:

I am. I am. I am.
Lighthouse for those around me.
Show the way for those who are still working at what they’re doing.
If I can, you can too.

This morning, I also decided I like my handwriting. It’s full of loops and curls, like life. Like me. I like how my letters run into each other in my haste to keep up with my brain.

As I continue to unpack the ADHD diagnosis, I’m not discovering more about myself. I am revealing more of who I always was.

Ministry of Sounds

Another in my series of living with ADHD, and not really realising it. Link for part one, Returning to Self and link for part two, I’ll Tumble 4 Ya. This one is a hot mess of sounds, time awareness and bruises.

I remember driving out of Doncaster Shopping Town, our son was still in his car seat with a five point harness, so not very old. He was cross, he was ratty, he was over shopping, people, lights and noise and his general demeanour in turn had set me off. I was sat at the traffic lights, also ratty, also over people, lights and noise so I did what I do to cope.

I put on some music really loud.

Our son started crying louder. I turned it up so I couldn’t hear him.

3.2km later (I’ve just looked it up), I had to pull into a garage at the roundabout, I was also now crying. I stopped the car in a parking bay and got into the backseat next to him. I undid his car seat and we sat with each other. Me apologising for putting the music on and upsetting him more.

In my late teens and early twenties I discovered clubbing. I went out to dance. From 9pm to 1am, two or three nights a week, I was on the floor. I didn’t care if I was the only one dancing, unusual for me not being worried about being up and visible. The music and the clubs I went to were a safe haven. The music pounding in my chest, took all thoughts away from me.

The bouncers knew me by name, I’d go clubbing with P and later E. Whoever I was with, it meant we’d be pulled out of the queue and fast-tracked in. The taxi company P and I used would also send a car out quicker to us at the end of the night, because they knew we were only 8 minutes up the road from the club and were sober. A quick turnaround and an easy job.

Every so often you get a song that lifts everyone and is the song of the season. If you’re lucky, its a great tune and will stay on the DJs radar, this is a song I listen to almost daily and I still love.

Bonus points if you knew what it was going to be before the link opened up 😉

It was a total floor-filler, the entire dancefloor wafting around in the middle of the song, waiting for the beat to drop and then we’d all go crazy. That song is my everything. It’s my starting ritual. It’s my mood changer when the world has gone to hell in a hand basket (hence the daily play). It’s my pep talk. I honestly can’t tell you how much I love it.

I’m going to do a playlist on Spotify, watch this space.

Rarely, I can also use it for a burst to get me through and give me one spare spoon for the day. If I do use it for that, I know I will need to get to bed earlier and sleep later as I’ll be useless in the morning. Life-style-tip, having batch-cooked and running a pantry saves me; because when I’m totally fried, it is very rare that we as a family won’t have something to grab and go for lunch or to nuke when we’re home in the evening for dinner.

Saltwater came out just as my heyday of clubbing in Eastbourne was coming to an end. In those days, we didn’t have the Spotify, so would you believe, I never knew what it was bluddy called! In a pub in deepest Wiltshire, I was behind the bar, on a walk around collecting glasses, the DJ put it on so he could have a pee-break. Crossing the dance floor, I asked him ‘What is this called?’ From the next morning, first via Napster.

Around the same time; we worked it out it was within the same month, the husband walked across a dancefloor in a pub in Townsville to ask the same question. About as far away from Wiltshire you can get. He still loves it too.

I was in Coles supermarket in the town we used to live in before we moved to Regional Victoria. I got to the tills and freaked out, leaving my shopping behind. I took our son and just bolted to the car. I thought I was having a panic attack, or extreme anxiety. Nope, I was again overstimulated, overwhelmed and overambitious about what I needed to get done.

The husband and I were both working full time, our wee man was in nursery full time. However, I wasn’t being paid for nearly six months of the year as the child care rebate cap (subsidising care for working parents), mostly being that around each January if you work full time you will hit the ceiling of what is paid to the centre. Leaving you to pay everything. Which means, my entire take-home wages went on fees from January through the end of June. I’d get a tax rebate at the end of the financial year, we’d pay some off what we’d had to put on the credit card. Wash and repeat for six years.

The husband was trying to keep it all together at his work, heading into the city from our suburb, getting up and onto a train before our son was awake. Our son was also picking up every single bug going, if he woke up poorly, I would be the one that had to stay home. When my six months trial period came up, the aforementioned eejit said ‘I don’t know if you’re suitable, you’ve not been in for a full week since you started.’ I had hysterics, took advice and offered to extend my trial period out for another six months to show that I was. There is more I could say here, but we’re going to leave it for now.

Being employed for over six months did mean I was able to access the EAP, (Employee Assistance Program). The Monday after the Coles trip the weekend before, I called the EAP from a meeting room. I said that I was having problems with my son. Reader, I wasn’t, I was in full flight mode and just pegged it out of Coles because my body told me too. My clearest memory was carrying him out like a surfboard when I shot out of Coles, I had put all my focus on us leaving. At the meeting, I was met with someone armed and ready to give me parenting advice. Not to talk me through having a meltdown myself, which is what happened.

From there I did get some regular counselling, but that eejit? I had to work late to go to appointments, even if they were over my lunch break. Did I mention disdain and disregard is something to look forward to working through with ADHD too?

You have permission to rest.
You are not responsible for fixing everything that is broken. You do not have to try and make everyone happy. For now, take time for you. It's time to replenish.

Learning to rest and recuperate is the hardest lesson I’m learning.

Writing about what I’ve been like my whole life, has taken me back to through time and place really clearly. I know we’re all struggling with time as a concept since 2019, it really has become more nebulous the world over. But that is what it is like for me, all the time. No pun intended. Whenever I’m going ‘home’, that is basically where I’m sleeping tonight. If I’m your guest wing, that’s home.

My sense of place and time is truly up the wahoo. If I say ‘A few weeks ago’, that could mean anything from about 2010 onwards. I’ll say ‘You remember!’ to the husband, and he’ll give me a blank look. I then have to go on a breadcrumb trail through people, places and things to get to where my brain is, leading him on a journey that I’ve just leapt to in my head.

My brain also fires off so quickly, I can forget what I’m doing, while I’m doing it. You know when you get up to go into the kitchen and forget why you’re there? That is me, daily. I live by lists, lists of lists, post-it notes, notes in my phone, a pad by my bed for when I wake up at 2am remembering something. I carry a note pad in my pocket at work so if I’m away from my desk I can pull it out. I can be found standing staring into space, pad and pen in hand, as by the time I’ve got them ready – I’ve forgotten what I’ve meant to remember. It is also my superpower though, as I can read a room and organise the shizzle out of anything because of what I’ve learned to do to organise myself.

I also didn’t realise until the past few weeks unconsciously since I’ve been in the workforce and flying a desk, I’ve set my day up by constantly drinking gallons of tea and water. Which means, I have to get up and away from my desk for a break. That was another 2am revelation that made me sit bolt up right in bed.

As I’m not aware of what is around me, I will walk into things. Fall over things. Drop things. I crash into people in the city, and not just because they walk so fricking slowly either. I am covered in bruises from walking into my desk; walking into walls or worktops; either opening the car door onto myself, or shutting the door onto my leg as my brain hasn’t yet got my leg in the car, before on autopilot it’s told me to shut the door.

If something is not in front of me, it does not exist. I love my bibelots as Georgie calls them, but if I have too many things around me, I get a bit lost. It’s great though, because I know when we go through the boxes of things in the garage over Easter, I’m going to see lots of things I’ve forgotten I had. As soon as I see it, I’ll remember. But seriously, the amount of

This has gone on a bit long so I’m going to leave you with a shining moment of ADHD glory. Every so often when I’m overstimulated and fretting about things, I will need ‘order and method’. Aside from buying a new notebook (the possibilities of them are endless. I can go into hyperdrive and go through the house on a purge and donate heaps of things to charity.

I used to live in a town with a fantastic second-hand bookshop. I’d take bags of books in, rummage around and come home with bags of different books #Bliss. One day I saw a book and thought excitedly, ‘I’ve not read that in ages!’ On the bus on the way home reviewing my bountiful haul, I opened the book up and saw my name in it.

I’ll tumble 4 ya

With thanks to Culture Club for the music, and the title of this post. Tumble turns are what you do at the end of the pool. This is the second in a series of posts talking about my late ADHD diagnosis, today I’m concentrating on swimming. Before we start there is a mild content warning with some of my other MH diagnoses. I don’t discuss anything, but the words are there.

I started swimming over the Easter holidays when I was 9 and my brother was 7. We lived in a seaside town, during the summer, we lived on the beach. Mum and Dad wanted us safe in and by the water. This was an intensive course, with lessons every day during the school holidays. Edit – Mum said I was 7 and my brother 5 years old.

On the first day, I’m in the first group. Water makes sense to my body; I just slide through it. If any of you have read Ian Thorpe’s autobiography, This Is Me! he describes what it feels like to ‘catch’ a perfect stroke. The water feels different in your hand, over your skin, when you get it right. Each stroke you try and replicate it, sometimes more easily than others.

Before the first week of my swimming lessons had ended, I was taken aside by one of the teachers, who was the wife of the coach at a local swimming club. I was asked to demonstrate what I could do after four and a bit days of lessons, about 2 hours total. I still remember showing her, over 40 years later; she pulled me out my lesson, to the middle of the pool (that I would later teach in for years). I remember how proud I was I could do something effortlessly, see previous post about not being able to do anything quite right…

That club told my parents they thought I was a future backstroke Olympian. From there on in, I was being coached and guided towards that. I was swimming training, land training. When I got to my early teens, I began lifting weights under supervision, and was given a diet to follow with ratios of proteins to carbohydrates. I had special warm up program to follow at galas. And because people were telling me to do it, I just did it.

Which is another way ASD presents differently with Assigned Female At Birth (AFAB). Because we as a society, have had it ingrained to pat little girls on the head. Telling them to sit down, be quiet, don’t fuss – there, there, there. And it is also partly why ADHD and ASD are mis-diagnosed for years in AFAB, because we don’t present like Assigned Male At Birth, and what a lot of the out-of-date schemas for diagnosis rely on. We don’t bounce around in chairs or charge around in the playground. Instead, we sit with our hands in our laps, bouncing our ankles, twiddling our hair, and in my case, biting my nails.

When I was 10 or 11, I was flying at swimming. And I mean flying, competing against people 8-10 years older than me and beating them. I was invested in this, simply because I enjoyed being in the water. It was a safe space for me. I can remember one Saturday morning, watching my brother’s swimming lesson. I was sat on the pool deck, next to Mum, sitting on a wooden bench in full sun, wiggling as the bench was scratchy under my butt. The urge to jump in, clothes and all was intense. It was a real yearning. The water made sense to my body, still does. Also, as I had to concentrate on constantly improving my stroke, focussing on what my body was doing, my mind was relatively quiet.

The constant raising of my heartbeat also squirted enough dopamine into my bloodstream to help me concentrate at school. I hate to imagine what my life would have been like if I didn’t have swimming as a framework to hang it on.

The only other time my mind was silent, as I said in my previous post, was when I was reading voraciously. Reading by my nightlight if I was ‘this close’ to finishing a book, waking up fuzzy headed and grumpy the next morning.

One day, I was maybe 11 years old. I was pulled aside after a training session and got told that I needed to give another child the backstroke, because that was the only stroke she had. I was told, I was such a good all-rounder, that I could afford to give it to her. What this means is in swimming galas, I wouldn’t be the first choice to swim backstroke for the club in my age group, this other girl was being put in to races instead of me. Even though I was faster.

Remember, I was predicted to be a future Olympic champion, that disappeared. I don’t know what happened for this decision, maybe her parents talked to the coach. Mum and Dad moved my brother and I to another club.

That rejection hit hard. I got in the pool, and it was like I’d forgotten how to swim it. From there on in, I managed to get through individual medley races, but I felt like I was thrashing around, not getting anywhere. My only explanation is that my muscle memory had switched off with the trauma response.

It wasn’t until I was pregnant with our son, who I had at 36, and I found myself in an outdoor pool doing laps before work. It was a beautiful morning, I thought to myself, ‘I want to look at the clouds.’ I suddenly found my stroke again, because there was no pressure on me.

Before I was diagnosed with ADHD these were my diagnoses.

  • IBS, I also have coeliac disease, so the symptoms do cross over, but IBS is really exacerbated when your system is on fire with cortisol.
  • Generalised Anxiety Disorder
  • Complex Anxiety Disorder
  • Complex PTSD
  • Trauma
  • Depression
  • Suicidal ideation
  • Body Dysmorphia

It is really hard living in your skin, just hanging out, taking up space with the carbon form that carries your soul around. But your soul is wrong, different, odd, strange, quirky (if you’re lucky).

It’s really hard constantly being told you’re not worthy. That you don’t belong. Being bullied day in, day out at school. That you look just like a boy. That you look wrong with short hair, that you don’t like wearing dresses to parties. That you’d rather be colouring in, reading, cross-stitching, patchworking until your eyes give out. That people don’t understand that you’re happiest in water; be that at the beach, or in the pool. Water gives you something that is lacking across your life, and you’re proud of what you can do with it. During the summer holidays, you will float on your back and watch clouds go by until you get called out the sea to go home, to be able to do it all over again the next day.

I’m going to blow smoke up my butt here. I am a really good swimming teacher. I have taught thousands of people either to swim or to improve their strokes, because I can explain to them what the water feels like when they’re doing it right. And can give them shortcuts to help them find it when they’re doing it wrong. I love teaching adults, particularly people who have feared water their whole life. I am loudly enthusiastic even when people learn how to stand up for the first time. In my lessons I would encourage all of them to cheer each other on. The joy it gives everyone in the lesson when someone starts kicking and moving is beautiful.

Back in 2002 or 2003, I was rebooking a swimming school for the new term. Phones were ringing off the hook, people queueing out the door. I stood working the computer, taking details of the people queuing up, one customer came up and said ‘I’ve been told I need to book in with Emily’, I said ‘That’s me!’ At another pool, another child talked about me so much, her pregnant aunt called her new daughter Emily.

But living with ADHD can mean rejection sensitive dysphoria, an extreme reaction to an outcome that other people wouldn’t worry over. This is what I had when I was told I wouldn’t be swimming backstroke anymore. This has also happened numerous times at work; as we’re concentrating on swimming, I’ll share this story then we’ll close, as I’ve rattled on long enough.

At one leisure centre, I was covering a lesson for another teacher who’d called in sick. These were tiny tots who hadn’t met me before, as at this pool I specialised in the school classes, as I could handle lots of children in one lesson. A couple of parents didn’t like what I was doing, only as I was different to their normal teacher, they stood on the poolside to watch me. The children hadn’t met me before, I’d got them all sitting on the steps to the pool playing with toys, blowing bubbles and a few games, just improving their water confidence to ease them into the lesson. When I stopped the lesson to ask the parents to go back to the viewing gallery, they called the Duty Manager out instead saying that I didn’t know what I was doing. We went back and forth a bit on that I’d been teaching for at least 10 years now and I did know what I was doing. The DM came onto poolside and backed them up – ignoring the policy. My reaction isn’t one I’m proud of; I got out the pool in tears and left him to sort them all out.

Because I knew, (know), I am a good teacher, my pride was hurt as I wasn’t listened to, let alone backed up by the DM doing his job.

A sense of hubris is always fun to live with too. When we know we’re good; we can be insufferable.

Not long after that, I stopped teaching swimming and never got back into it. It was like the backstroke thing all over again, it felt like it was taken away from me. Instead of me being able to give it up when I was done. RSD is what I think I’ve been living with as part of my ADHD, not some of the other labels I’ve picked up along my travels. Particularly when RSD ruminates, it can present as anxiety and depression, spiralling down further as your brain believes its’ thoughts. Remember, you are not your thoughts, you are thinking your thoughts.

But there’s more on that in my next post.