Fears about seeking Adult ADHD diagnosis

[tmas]

Kind of forever I have suspected that I have ADHD (now 21), but always dismissed it because some things didn't resonate about the immediate google search about being a terror in class or behind academically or an outwardly destructive child (or a little boy). Only in the last few years did I do more research and learn about the subtypes and the fact that it sometimes presents differently in females (and listened to people with it speak) - knowing these things it really seemed like a perfect fit, but I kind of told myself I was being dramatic and attention seeking (rationally I know I'm neither of those things but I fear it's the truth and the people I open up to always say this to me and it's hard to clear out the garbage).

Basically I'm afraid that when I finally go to the appointment they won't believe me. My original psychiatrist said she could organise diagnostics with a colleague and then revealed they would be assessing for childhood ADHD (said my MOTHER! had to take the exam for me, and it would be less accurate as I am a female and an adult and then seemed to conclude it might not be helpful, shocking right?). I was certainly shocked and got quite mad... I kept pushing and she revealed that I actually COULD see an adult psychiatrist (why wasn't that the first suggestion??). Anyway I couldn't see him for about 7 weeks, now in only 3 weeks which is still so far away given how long I've been waiting... but soon enough that I'm doubting everything. I've never been able to hold a job and am a uni student so I live with my family which is continuing to take it's toll. I'm always being told that I'm wasting my time with this doctor and setting myself up for disappointment by banking everything on getting a diagnosis. They thought I had narcolepsy but I couldn't afford the test so I have to pay the private script fee for the meds I take for that which is taking a toll too (and hard to get scripts for without diagnosis, hard to function without).

I worry that this is true. I am truly putting all my eggs in this basket... I don't know what will happen when he says "No, you're just having a depressive/anxious/OCD/trauma episode." It doesn't feel like any of those things. I've done all those things and all those treatments, but these things remain. Some of the visible symptoms I had I was trained out of like fidgeting and talking fast/often, I always felt judged for how I move through the world, by me and others. Can anyone relate? What helps with this spiral?

[Sophie_M]

Hi there, tmas!

Thank you very much for the honesty and courage of your post! In moments of this kind of discomfort and uncertainty it is very to calm up and hide so we congratulate you on your help seeking. 

It is always important to start from a position of 'know thyself' but without criticism as much as possible. So whilst we encourage you to let go of judging the way you move through the world, it is completely healthy to acknowledge that things don't feel like they are working. 

Sadly, ADHD seems to be one of those disorders that can still be hard to navigate, whether diagnostically or in terms of acceptance and lifestyle. It is so pervasive in its impacts that it can look like a lot of other disorders - conversely, some disorders can look like ADHD. Whatever may come of out this stage of diagnostics, please persist! Persist until you find the tools that work for you and make life easier and more enjoyable.

A really good place to start in the meantime is to look at a short course in Dialectical Behavioural Therapy (DBT) or any apps that use those areas of awareness. DBT is not just for BPD and ADHD but can also be extraordinarily effective for Anxiety, OCD, Depression and Stress Burnout recovery. No matter what, do not give up, keep seeking the things that work.

And remember to reach out to us here if you need any more support! The helpline is open 24/7 on 1300 22 4636 and so is the webchat

Stay in touch, tmas!

Regards,

Sophie M.
 

[tmas]

Thankyou for replying:)

Believe it or not I have tried DBT (and CBT, ERP, another one I forget the name of, “something” profiling?) and none of them helped and worsened my symptoms, only psychotherapy worked but I’ve had to stop ($$$). It helped shift my perspectives on some things I’ve gone through and has in my opinion led me down the path of seeking this diagnosis. I just don’t see how I can reasonably see myself as lazy, stupid, impulsive, and detached when I know that not getting things done the way I’m being told I should isn’t a choice I’m making, I find it extremely upsetting and insurmountable, and that I don’t deserve or need to feel constant, nagging, chaotic self-doubt all the time. I’ve always felt a bit mad, both I and those around me see my brain moving differently, and I’ve actually tried recently to unmask occasionally… I go a bit feral if I get too comfortable, but I feel psychically lighter when I do. Until I’m told I’m being annoying that is.

The idea of masking is wild to me, I had thought of myself as doing it before the thought of any diagnosis at all had ever entered my mind, but I think almost all female born children and taught masking in some form from day 1.

Don’t really know the point of this rant, letting out the noise I guess. Wanting to seek help isn’t the problem here. If I had time and money I would be doing therapy and I would have pursued assessment earlier, and I hate that I did hide it before now and when I finally want to become something of a human person there’s a brick wall in front of me. I guess I really wanted advice/anecdote from others who share the experience.

[therising]

Hi tmas

I can kinda relate to where you're coming from. My 16yo son was pushing me to get a diagnosis for him, for ADHD, based on the challenges he faces. He wants to be able to achieve VCE marks next year that will get him into studying marine biology at uni. Finally, I took him for an assessment. While he didn't meet the diagnosis for ADHD, the psychologist suggested looking into him being on the autism spectrum, with him being at the high functioning end with great levels of energy which doesn't allow him to keep still while sitting. A serious lack of focus is also an issue, as well as other factors such as not being able to tolerate boredom. As my son says 'I'm not looking for a label, I'm looking to understand how my brain/body works so that I can learn how manage the type I have'.

The skill involved in understanding his triggers has allowed him to manage those triggers somewhat better over time. For example, he's come to understand his sense of wonder can be a major issue. He has a truly brilliant imagination and will wonder through it. If you asked him how tall a certain well known person is, he will imagine them and estimate their height but has has to know for sure how tall they actually are. It's a compulsion. He has to investigate what he imagines while all serious school related study takes a back seat. While some may say, that's ridiculous and he simply needs to concentrate better, it's not that easy. As one person explained, there are parts of the brain that are responsible for wonder and imagination. If exercised too much, they come to naturally override the part of the brain responsible for greater focus. So the skill of exercising focus involves gradual development in relatable ways that actually work. There are plenty of ways that don't work.

I think people can brush off certain behaviours by calling us neglectful, lazy, out of control or attention seeking. At the end of the day, our behaviours exist for a reason. Finding out the reason is what matters most, in my opinion. Once you find out the reason, it's easier to be a more reasonable person. A reasonable person would say 'Ahh, that's why I think and behave the way I do. It makes sense' or they may say 'That's what my trigger is, in this case. I'll work towards managing it'. A reasonable person will always want to know why they behave the way they do (the reason) so they can manage.

You sound like a reasonable person stuck in a frustrating long drawn out expensive process.

[tmas]

I have considered that I might be on the spectrum but I’m really not sure. I definitely have sensory issues, now that my OCD is manageable I can see that (I was told they were somatic obsessions, hyper vigilance, and sensory overload relating to anxiety, but I kind of know that often the sensation came before the spike in anxiety, or was cumulative and I’m not sure if that’s how that works).

I was seeing someone a while back (we were both in very bad places at the time) and she’d received an Aspergers diagnosis at 19, after being told she had a million other disorders first. Granted, she did have a million problems but I just can’t forget one interaction where I mentioned feeling a certain and way, “like there’s a joke that everyone’s in on, but me, and they’re wanting me to laugh to make it easier for them” and she got a bit worked up and basically told me, as a nuerotypical, to stop pretending to be neurodivergent, because she is diagnosed and she’d been a happy (almost oblivious) child. Anyway I took it very personally and buried it until I realised hey… maybe a doctor calling me neurodivergent is seeing something that this emotionally invested individual isn’t…

But, again, any mention of autism or adhd and my family gets extremely riled up. My mother trained me out of fidgeting basically by throwing tantrums so I felt guilty and surprise, it worked! It worked at stopping me bouncing my knee that is… then I picked my skin, ground my teeth, hummed, cracked joints, other compulsive things… and cried when I couldn’t do these things which always made me feel infantile and was chalked up to anxiety frying my brain, and it did feel FRIED.

Now she denies me ever being energetic, and tells me to get off my phone/google to stop making excuses. I was also considered “gifted” as a child (being told that has been an absolute burden) and once the structure of school started changing and no longer indulged my usual habits my grades dropped one at a time This is the only reason I ever got treated, and I know my over achieving mother and sister kind of look down on me for struggling the way I do with studies and everyday things. I did point out to my sister that she was barely a mentally healthy human being and she literally said “well I’m high functioning, so you can’t really talk.” Constant comments like that are wearing me thin, gonna move out soon, but theres things slowing that process down too.

They oppose me seeing this new doctor. I’m at a loss.

[therising]

Hi tmas

I think when it comes to the autism spectrum, for example, it's interesting regarding the different viewpoints. I've found there are typically 2 schools of thought. One is problem based where so called 'faults' are perceived. The other is the school of thought that involves people on the spectrum having greater abilities or them being more advanced in certain ways compared to the neurotypical person. For example, a neurodivergent person may:

• have an admirable amount of energy. You could say it's not the energy that's the problem. The issue may come down to how they manage channeling it or a led to manage it. Is the energy managed skillfully? Is it put into something like high energy activities or is it held within at almost intolerable levels for lengthy periods of time, like in a classroom? People can sit still with basic levels of energy but with hyper levels there will often be a parts of the body that reflect such high levels. For my son, it's his legs.
• have an almost superhuman ability when it comes to how they hear sound. The problem may not be with sound itself but how sound is managed for someone so incredibly well tuned into it. The ability to hear when a piece of machinery or an appliance is on its way out, on the verge of breaking down (based on the slightest difference in the sound of the motor, which no one else can hear) is incredible. To easily hear when a guitar is out of tune or to hear when there's some annoying high pitch sound on a tv station others can't pick up, until it's pointed out to them, is also incredible. Such a person's tolerance levels will be very different than the average person's
• have an amazing ability to feel. Whether you can feel the intention behind a person's words, feel the incredible things you can imagine in your mind, feel when someone's depressing you or shutting you down, feel the stress from the people around you (without them saying a word) or feel if something's 'off' about a person, the ability to feel is an amazing one. The problem isn't necessarily with the ability itself, it may be with not knowing how to manage it

Whether it's an already high level of all 'round energy that easily triggers a person's nervous system into overload/anxiety, the frequency or volume of sound that leads to it or the ability to feel how we interact with certain influences, there are so many possible factors that can lead a gift to feel more like a curse.

Can't help but wonder how you're gifted, what gifts you have.

[tmas]

To preface, I don’t believe I’m on the spectrum just from what I’ve read online, but I’d be lying if I said I didn’t think about it. My childhood was a little (a big little) unstable and I worry they'll tell me it’s trauma responses unburying themselves.

My energy as a kid was very much internalised, and I had restless legs and Insatiable curiosity that had me up until 3 every night reading (at age 8). I did talk very fast and uncontrollably and people thought it was quirky as a little kid, but I was trained out of it slowly, and then forcefully around 10 when I was encouraged into debating to help my speech. I was an insomniac, but just before 17 I suddenly became a hallmark narcoleptic (a complete flip, and preceded by a few years of ssri’s, extreme ocd/depression, panic disorder, etc). It’s improved a bit, but I’m regularly medicated for the symptoms now (no diagnosis).

I often find, whether positive or negative, I will start talking and not be able to stop myself, because there’s always MORE. I sometimes can recognise the point where I’ve gone too far now and I get very insecure. “Friends” in every period of my life said I was too intense and that people think I’m conceited bc I ramble on about my own “knowledge” as if to flaunt it and become dogmatic. I’ve never wanted to do this, ever. I think I just wanted someone to share the joy/curiosity/passion I had for a topic or story and people don’t want to exchange information over little lunch apparently… happens less as an adult, I choose who's around me.

I’m aware of sensory stuff recently. Good because I can avoid things that cause anxiety, bad because I feel more sensitive now that I don’t fight it. Before I thought I was anxious, now I feel that too many people are speaking. I get stuck thinking about my nails, I repeat and undo movements that cause uncomfortable sensations for many minutes (ocd I guess). I know this happens with adhd… and anxiety/ ocd and asd. Too many options, and also the thought that maybe this is just the human condition. I am always in overdrive and think I always have been. It made sense to call it anxiety, particularly given that the overdrive lended itself to negative feelings, but now I have it in good moments too. If I let myself fidget I go genuinely feral, talk excitedly, make better art (art student), I also get angry and nervous so quickly. If the energy is internalised the flip is also internal, and that has been my preferred method of breakdown for a while now.

[therising]

Hi tmas

I find it interesting how 2 simple words can better define certain traits we have, with the words being 'basic' and 'serious'. For example, you can have a basic sense of wonder or a serious sense of wonder. A basic sense of hearing or a serious sense of hearing, a basic sense of energy or a serious sense of energy etc. While a basic sense of something is not necessarily a problem, a serious sense or serious degree definitely holds the potential to create a sense of disorder in life. One of the things that annoys me is when I hear people say something like 'There's no such thing as ADHD' (grrrr). Really?! When a person's attention and/or their levels of energy are creating a frustrating degree of disorder for them in their life, there's no choice but to believe things are serious for them.

It's amazing how when you put a number of people together with the same degree of disorder how well they can relate. Put together a group of obsessive wonderers and you suddenly have a philosophy circle or a circle of people who lead each other to wonder about the most amazing things. Put together a group of seriously hyperactive people and you suddenly have an energy circle of enthusiasts who may discuss a lot of constructive ways to channel that energy. A group of fast talkers, who can process what each other is saying at lightening speed and you fit more conversation into the time you're together. A group of people who can process sound in amazing ways and you have a circle of people that all agree on the best places to avoid (shopping centres, crowded events etc). I believe the best guides for us can be ones who relate to our own experiences. With some having more experience, they can share tips on skill development - the skill of speaking slower for those who can't process as fast, the skill of managing a serious sense of wonder through time management (setting time limits) and so on.

It's said that certain conditions can definitely be shaped through trauma and/or conditioning. Whether a person's brain developed this way in the womb or whether it was conditioned into developing this way through life circumstances, what I think matters is that a person is led to manage how they tick, with a similar brain developed through different circumstances. It can become highly stressful and/or deeply depressing not knowing how to best work with it.

Do you feel it's your seriously high energy levels that leave you feeling so incredibly exhausted a lot of the time?

[Anna84]

Hi tmas,

I completely understand and relate to your fears about being dismissed and worrying people will think you are being attention seeking.

I was diagnosed with ADHD about 18 months ago and I am 37! I wish I new earlier on in life as it has held me back a lot.

I always felt different and to be honest I’ve always felt stupid in comparison to others and could never understand why. It wasn’t until I started reading about ADHD (and how it can be different for females and often goes unnoticed, especially the inattentive type) that it clicked for me and I decided to explore the possibility.

I was so worried that a psychiatrist was going to think I was making things up or trying to get medication but the whole process was actually amazing and validated my thoughts. It’s been life changing in a lot of ways to finally understand and get help.

I think you should definitely go with your gut and don’t be afraid to investigate. It may not be ADHD but it could still point you in the right direction. You don’t have to tell anyone about it if you worry what they might think. I am the same so I have just kept it to myself and my husband.

good luck!

[tmas]

Previously maybe it did wear me out, but I don’t think the energy is what makes me exhausted, NOW. The tiredness began suddenly and was pretty textbook narcolepsy (though theres a correlation apparently with adhd… makes sense I guess, they’re related to dopamine). Again though I don’t have a diagnosis, and I kind of dont know if thats what it is given my other issues… also I get scoffed at if I mention it.

Before the sleep attacks I was a chronic insomniac, and particularly in my teens I was constantly exhausted in the physical sense but mentally I wouldn’t turn off (even though my mental capacity was iffy at best with little or no sleep). I take narcolepsy meds (apparently theyre used sometimes for adhd too without “addictive” properties) and they help alot, particularly with my mood oddly enough, and I’m less agitated on them and actually able to do some stuff occasionally.

And yes, these things can be good for me - not to toot my own horn but I do have alot of creative ideas (follow throughs a bit ehhh) and LOVE a job thoroughly done, I can never have enough information about something I’m interested in. I can occasionally manipulate essay questions to make room for this and lecturers tend to like it! I’m a good writer and was early to reading and writing as a child (kind of a curse, if youre “gifted” no one will ever believe that youre struggling until its too late and youve fallen behind).

This being said its been overwhelmingly negative so far. I’m in my assessment block and I’m unbelievably stressed. I’m just constantly breathing a little bit too hard. You’d think the worry would make me fuss over the work… but I’ll open my laptop and stare at it for hours straight barely able to do anything. I’ll title the document and that’s all I can do in a month. Unless I’m particularly interested which is hard to maintain when theres any criteria or expectations, and now I’m here with three essays and two reviews in the next ten days and I havent started any of them. In a world without assessment… imagine what I’d do. I just get kind of paralysed and will “do nothing” but my brain is chaos.

This all just kind of sounds like anxiety… but it doesnt feel like just that to me as someone who had had alot of anxiety. I worry it is trauma and my brain is just scrambled, but I’ve responded so well to a stimulant (which is $$$) and trauma is something i’ve truly grappled with and only in doing that have I come to see these things as an issue.