mmouseaudhd

[mmouseaudhd]

Support is out there

So you're like me and don't have help from family while navigating this journey. What do you do? Who do you go to for help?

For me, this has been a combination of private clinics, hospital visits and different crisis lines. I also access a community group that focuses on helping people develop social skills and navigating mental health issues in a healthy and safe way. I won't be naming them directly as they are local to me, but I want to discuss them to help people understand there are other groups out there like them.

It is worth noting, I have only realised in the past couple years you don't have to suffer silently or do it all yourself. My parents raised me to believe that I had to persevere through my struggles regardless of how much they are impacting my well being.

I'll start with private clinics, as that's where I have spent most of my time. For me, this has looked like monthly psychology appointments and partaking in group therapy as well. Honestly, it all comes down to the clinic you're at that determines what sort of care and therapy you receive. My first 2 psychologists only offered CBT, and while this is a good form of therapy for some, in my case it isn't the best form for me. After 9ish years at the same clinic, I made the decision to change clinics to one that specialises in trauma therapy as well as offering EMDR and DBT.

Dialectal Behaviour Therapy focuses on helping manage intense emotions and relationships, and it is very beneficial to people with BPD as well as people struggling with emotional disregulation, self-harm and suicidal tendencies, and substance abuse issues.

Eye Movement Desensitisation and Reprocessing focuses on treating people with PTSD and other trauma related conditions. It works on helping process and move past traumatic events by giving you a safe space to remember and process the event and emotions linked to the event.

Next up, hospital visits. In my experience, trips to the ER have been highly traumatic and have even set me backwards in my recovery journey. But thankfully, not everyone has the same experience as me. Once again, it all comes down to which hospital you end up at, and the medical professionals you see. If you struggle with mental health issues, do your research on which hospital has the best MH team as well as the reviews from other patients who have been seen by them. I haven't been admitted for a inpatient stay before, as I have been deemed to have capacity, even times where I have been sent by my GP for psychiatric assessment, so I won't be talking about that part of the hospital journey. If you are here in Australia, make note of the 1300 MH CALL number as they will be able to triage you before you even step foot into the hospital, as well as advise if you should seek an ER for people who don't know when to make the decision to go.

When it comes to crisis lines, I prefer the ones with a webchat option as phone calls give me a lot of anxiety. The ones I have personally reached out to are Lifeline Crisis support, Beyond Blue and Kids Help Line. I won't be talking about Kids Help Line much, as I haven't accessed them in years, and I am now too old to use them. With the others, once again it depends who you get. My experience with Lifeline was that it wasn't very helpful, but that could be due to the person I was paired with. Beyond Blue on the other hand was very helpful, made me feel seen and heard, and even sent me resources I could use after the chat finished (Thanks Deb). There are so many other crisis lines you can reach out to, and not everyone will be the same.

One worth noting is QLife Australia, they are a LGBTQIA+ support line that is run by peer support workers that are themselves part of the queer community. For a lot of queer people, talking to another queer person can be less scary and they find it can be very helpful to talk about LGBT+ specific things with someone who already understands what they are going through.

Community centres are another very important part of the support network I access. They can vary depending on which one you go to, but the one I use has a variety of different programs and supports they offer. They offer counseling, peer support workers you can meet with regularly, plenty of groups and activities you can join in (my favourites are the gym group and art group my centre offers), as well as a safe space to just come and hang out at where there is always someone you can have a chat with. They also offer a short stay facility that is not a crisis or respite centre, but somewhere you can stay at while working on a specific goal in your journey where you have access daily to the peer support workers. Not every centre will be like this, but look into what is offered around you to see if there's one that works for what you need.

Hopefully this has shed some light onto different supports I have accessed and can help you decide which pathway you want to take yourself. Most importantly, keep going, keep your head up, and don't let anyone make you think you are less just because you need support in life

[mmouseaudhd]

Being neurodivergent and transgender

Part of my diagnosis journey is heavily tied with my trans journey. As I have previously said, if it wasn't for the team at my gender clinic I wouldn't have been diagnosed yet and would still be searching for a psychiatrist who would see me.

Studies for years have been finding a link between Autism and being trans. Some credit this to autistic individuals not perceiving gender identity like neuotypicals, some credit it to hormonal factors during pregnancy and other prenatal influences, while others credit it to social communication differences between autistic individuals and neurotypicals.

Because of this, autistic individuals are more likely to be queer and or gender non-conforming with studies reporting up to 70% of autistic individuals fall into the non-heterosexual category, and another study reports autistic individuals being 6 times more likely to identify as trans.

This all factors into the diagnosis journey. It's worth noting before I delve more into the trans related issues around diagnosis, until recently most AFABs (assigned female at birth) with Autism or ADHD go undiagnosed for years due to the fact until recently the diagnostic criteria for these were heavily swayed towards male symptomology, and a lot of medical professionals misdiagnose or discredit autistic and/or ADHD AFABs. I have been one of these people.

Emerging studies have discovered that transgender/gender non-conforming people are even more unlikely to be diagnosed than AFABs, and they believe this is due to the fact that, like how AFABs go undiagnosed due to the lack of understanding into how they experience their symptoms, there is little understanding into how trans people experience their symptoms. Because of this, a lot of trans people don't get diagnosed until after they start their transition journey, like myself.

For me, I fall into the category of people who went undiagnosed for years due to the fact I am AFAB. It wasn't until after I started my transition journey that I was able to access supports that lead to my diagnosis. There has been many times doctors and psychologists have been informed about different struggles I have faced, and not one of them suggested testing even though these struggles could be directly linked to my Autism and ADHD.

The earliest instance I have of this is something my mum has told me about as I was to young to remember. She had taken me to the doctors as she was concerned with my eating habits at the time, I would only eat custard or round meat (Devon/luncheon meat) and tomato sauce sandwiches, and the doctor at the time said as long as I was happy, healthy, running around and playing to just feed me what I want. We now know this was due to my sensory issues around food, but at the time this was overlooked.

On the flip side, the doctors I have seen about my gender transition have never once discredited my struggles, and even were the ones that were able to get me diagnosed. Because they have the understanding about the link between Autism and being transgender, they have been able to provide me with the correct support through this journey. If it weren't for them, I would still be fighting to be heard.

All this being said, as further research emerges, medical professionals have a better understanding about the link, as well as further understanding around the fact that there is a mountain of different symptoms and not everyone presents the same way.

Me being trans has heavily impacted my journey here, and is an integral part of who I am. Keep fighting to be heard, keep your head up and don't let anyone tell you what you feel doesn't matter.

[mmouseaudhd]

Life post diagnosis

Where to start. So I finally got diagnosed, but where to next?

Top two priorities for me post diagnosis are getting on NDIS and DSP. Both the NDIS and DSP would greatly improve my ability to cope with life and get the supports I need. I've given a brief overview of each below, but please if you are looking into getting on them yourself do further research as they have very strict criteria as to who can get them.

NDIS is a government funded disability service here in Australia. They work with participants to create a plan of what they need support and services wise, but have very strict criteria for who can access it. With all my diagnosis's, with the main one being the ASD level 2, I qualify for funding, the problem I am now running into is finding support to access this.

DSP is the disability support pension here in Australia and it has very strict criteria as well for those looking to access it. You have to be diagnosed, reasonably treated and reasonably stabilised and prove this with your application form, as well as the following appointments Centrelink sends you to. These are a JCA (Job Capacity Assessment) and an appointment with their own doctor to verify what your treating doctors provide.

I don't have the best family relationships, and due to this I have little support from them with my application for both NDIS and DSP so I am having to access community supports to get help with these applications. This is becoming an increasingly frustrating and overwhelming process as they do not make it easy to complete by yourself.

For the NDIS application I am looking into using an LAC (local area coordinator) who will be able to support my application and if I'm successful, help me create a plan for NDIS which typically involves funding for Psychology, Physio, OT, Speech Therapy and in some cases a support worker. There is further funding you can qualify, but as every plan is person specific, you need to be able to provide proof or reasoning as to why you need those supports.

For the DSP application I am currently trying to find a community support I can access to receive help with the application process. I also am in the process of collecting all the necessary forms and reports I need to support my application. As you need to provide proof of diagnosis, as well as further reports to confirm the condition is reasonably treated and stabilised, you need to have a variety of reports from all of your treating medical professionals and most of these will set you back a couple hundred dollars each.

So where does that leave me? Well to start with, I have no way of accessing either of these until I receive my report from my Psychiatrist, which I am still waiting to receive. Once I have this report I am able to request supporting reports from both my GP and Psychologist to confirm this diagnosis and what treatment we have already tried and any further treatments available if any. The problem with getting these reports is the money required to get these reports.

As I am on the JSP already, I do not have the extra money to pay for these reports so until I can get the money I am left not being able to access these desperately needed supports and funding. The only options I have for this is wait until I can afford these reports (which honestly at this stage could be years), somehow convince my family to help with the costs, or hope I can work out a deal with the clinics to pay off the reports over time.

The hardest thing I am struggling with at the moment is the fact I'm having to do this all by myself. I'm hoping to talk with my mum at some point to ask her if there's any help she can provide, even if its helping me with the application processes, but I am very doubtful that she will be able/willing to provide any.

Hopefully this is helpful to anyone looking at these processes themselves, but this honestly was more just to get out what I've been struggling with recently

[mmouseaudhd]

Diagnosis Journey

Hey, this is an explanation as to how I got diagnosed as well as the hurdles I ran into during this process.

To start with, why wasn't I diagnosed earlier if these issues have plagued me my whole life? One of the first and honestly biggest reasons people go un-diagnosed until adulthood is their behaviours aren't regarded as "different" or "not normal" due to their parents also being neurodivergent yet un-diagnosed, and this is a big part of why I wasn't diagnosed. When your parents are also neurodivergent the typical symptoms and behaviours of Autism and ADHD don't raise questions as the parents themselves exhibit them as well, and if they are un-diagnosed themselves they won't realise there is something else going on.

Within my own family my dad exhibits a lot of Autistic traits but as he was able to make it as far as he has I should be able to just push through as well which led to me suffering from burnout at multiple points in my life, as well as being punished for showing my Autistic traits growing up. I was labeled the meltdown child, and the cousin that always has "temper tantrums". My siblings also learned early on they could push my buttons to get me to melt down so they wouldn't be punished and escape the abuse we suffered growing up. My older sister has since gone on to receive an ADHD diagnosis herself and has responded well to medication. Because of our upbringing, my other siblings, while exhibiting symptoms that could qualify them for diagnosis, probably won't seek out testing. This is because their symptoms are less severe and they are able to manage them without need of diagnosis or medication. Also the fact that they got to see first hand how our parents handled my MH struggles, which wasn't the best, this probably also adds to why they do not want to seek out a formal diagnosis.

Due to this, as well as not being taken seriously by my parents regarding health issues, my struggles were not noticed or seen as an underlying issue that needed to be addressed. Another contributing factor is the fact from as early as primary school I suffered from extreme levels of anxiety, self harm tendencies and had my first suicide attempt at 15, so everyone was happy to "sweep it under the rug" and not address anything as wrong outside of putting me in CBT therapy.

When I finally started questioning if there was something else going on outside of the anxiety and later diagnosed depression, the first time I brought up the potential of being Autistic or having ADHD with my then psychologist the first thing she said to me was 'When you first started coming to me I thought you could be Autistic but you make eye contact so that's not possible'. This was really frustrating as not every Autistic person struggles with eye contact, and even if they do society has trained us to believe eye contact is important so a lot of us learn to make eye contact so we can mask and fit in with the social norm.

I continued to see this psychologist for close to 8 years as I was navigating the industry by myself and found it easier to stay with her as I didn't want to have to talk to someone new and fill them in on my whole MH history. During the rest of my time with her I continued to struggle with self harm and suicidal tendencies and eventually I was passed over to another psychologist at the clinic due to my first one taking on a different role within the clinic.

My next psychologist I was with for 2 years, still struggling with all of the above issues and after my last big mental breakdown I made the decision to change psychologists again as I felt while I was surviving, I wasn't thriving and I found a clinic that specialises in trauma therapy as well as DBT and EMDR. This new clinic has been incredible and I have made more progress with them than in the combined 10 years I was with my previous clinic.

This breakdown was a turning point in my life, as it had landed me back in the ER and like many people who have had similar journeys to me, I ended up with a BPD (Borderline Personality Disorder) diagnosis. Due to this new diagnosis I requested further screeners for ADHD, Autism and BPD from my psychologist at the time. Due to the large overlap between all 3 conditions, we were trying to figure out if the BPD is there, or if it is a combination of Autism and ADHD, or if its all 3.

That's as far as I got for testing for the next little while as the main goal with my new psychologist was keeping me from relapsing. Also this is where finances came into play regarding the diagnoses. There is currently no way to get tested publicly within Australia as you require either a clinical psychologist or a psychiatrist to complete the testing which does not fall under the public system, and it is not covered under Medicare with a few exceptions.

If i was to seek out a private diagnosis I was going to be set back over $3000 and with the fact I haven't been able to work for 12 months due to other health reasons, that was not feasible for me as I do not have the ability for financial help from my parents or family. During my search for more affordable testing, I found that if a pediatrician or psychiatrist refers you for testing before you reach 25, medicare will reimburse a portion of the testing. This was a game changer.

This new discovery was only possible due to the 2023 medicare overhaul that was completed and it meant if I was able to even get 1 appointment with a psychiatrist testing might become affordable for me. But unfortunately this is where I ran into the next hurdle. Trying to get into a psychiatrist before I turned 25. Currently in Australia psychiatrists have months long wait lists, and many aren't seeing new patients at all or aren't seeing new patients for testing purposes. Due to my extensive MH history, I got turned down the private psychiatrists I was referred to, and so I kept having to get new referrals for new psychiatrists hoping one would see me. The ones with availability were over $600 per appointment, which meant I was unable to see them due to money being a major factor at play, and even then a lot of them weren't accepting new patients for Autism testing which meant they wouldn't see me. Some knock you back straight away, while there was one that took over 3 months to even review my referral only for me to be informed they didn't have capacity at the moment for me.

While all of this was happening, I was being seen by a Gender Clinic for my transition journey and while meeting with the social worker I told her my struggles with getting into a psychiatrist for testing. This was another turning point for me. This social worker was able to argue my case with the whole team to get me into see their psychiatrist for my testing and diagnosis. If I didn't have her advocating for me, I would still be in the same spot, trying to find the money for private testing and looking for a psychiatrist who would take me on as a patient.

Due to the testing I had done with previous psychologists as well as the medical history provided to the psychiatrist by my health care team, I was accepted for confirmation of diagnosis through the Gender Clinic.

I finally had my appointment with the psychiatrist, and due to the extensive history that was provided, he was able to confirm that I have Autism level 2 and ADHD. The screeners I previously completed with my psychologist were essentially the same questionnaires he would normally have patients complete for the assessment, so he did not have me complete new ones as they were still within the necessary time frame, he just completed the verbal portion and with all the information provided, as well as the answers to his question during the appointment he felt confident confirming these diagnosis's. He is going to continue seeing me until we find a dose of medication that helps my ADHD symptoms which once we do, he will be able to refer me back to my GP for ongoing scripts.

After years of fighting to be heard/seen within the health care industry, I was finally able to be diagnosed and am now able to start accessing the supports I need to help me live my life. The biggest take away for me was that even if you get knocked back, keep fighting for yourself, because someday someone will hear you and be able to assist.

The Australian government needs to have a look at the current system for diagnosing these conditions, as if you are not diagnosed as a child you are left having to find funding for testing which for a lot of people at the moment is not possible. If i wasn't able to access the psychiatrist through the gender clinic I would be still in the same position. I fully acknowledge that the reason I was able to access this service is because I am also trans, and as our government has put a halt on gender services for under 18s, meaning shorter wait times and more appointments available, the gender clinic was able to get me in with the psychiatrist due to the fact I haven't been able to find one in the community.

I hope this is able to assist anyone currently seeking a diagnosis themselves, and please do not give up the fight to be heard and seen

[mmouseaudhd]

Welcome to my new page

Hi everyone, my name is Mickey and I was recently diagnosed with Autism level 2 and ADHD and this is my journey.

The aim of this blog is to give me a space to share my story, as well as document my daily struggles, especially with the fact I was diagnosed as an adult while these issues have plagued my my whole life.

A little bit about me; I am 24 turning 25 in a couple months and I am a trans man who has been on hormones for almost 12 months! I have struggled with my mental health as long as I can remember with a few hospital trips in my past and a history with self harm and suicidal tenancies. These are all integral parts of my life and journey to diagnosis as I have been not taken seriously due to having a long list of MH issues and have been discredited in my search for answers due to them.

I am Australia based so a lot of my information will be regarding the medical industry here in Australia and the diagnosis journey I went through will probably be different than a lot of other peoples. I aim to discuss the financial hurdles I faced in getting diagnosed and the further hurdles I face post diagnosis.

Most importantly, I want to help people who are in similar situations to me help fight for advocacy for themselves and to be heard and seen as more than their diagnoses. A lot of the information I have is solely through my own research as well as my own journey through the health care industry so please do not take it as the be all end all and "take it with a grain of salt" as not everyone will experience what I had to go through for diagnosis and finally reaching this point.

Above all else, I look forward to being able to share my journey and have a space where I can just talk about what I've been through.