Yellow Ladybugs Submission to the Inquiry into Assessment and Support Services for People with ADHD -June2023 TAB LE OF CONTENTS lnt r oductio n.................. .. .. .......... .. ................ .. ............. ........................ .. .. .. ....... Page 1 Abo ut Yellow Ladybugs/Background .. .. .. .......... .. .......................... .. .. ............ Page 3 YLB Comm un i ty Su rvey. .. ............. . .. ................................................................. .. Page 3 Recommendation 1.................. .. ............. .. ............. .. .......... .. .. ......... .. .. .. .. ......... Page 4 Prio ri t ise i np ut fr om ADHD/AuDHD•l ed organisations and AD HD/AuDHO individuals and the ir fami lies t hrougho ut t he I nq ui ry Recommendation 2.................. .. ............. .. ............. .. .......... .. .. ............................ Page 5 Implemen ta tio n of ADHO/AuDHD-led or co-design ed research programmes focused on addressing t he gender bias t h at cu rr e ntly prevents many girls, wome n and gender diverse people fro m being able to access ADHO assess m ents and su pport services. Recommendation 3 .................. .. ............. .. ............. .. .......... .. .. ......... .. .. .. .. ..........Pages Implemen ta tio n of AuOHD-l ed or co-des ig ned research prog ra mmes t h at expl ore t he specific needs of t he AuOHD commu nit y, incl udi ng gir l s, wo men and gender diverse people as a margi nalised group w it hi n t his co mm unity Recommendation 4 .................. .. ............. .. ............. .. .......... .. .. ............................ Page 5 Implemen ta tio n of a neurodivergent-l ed national campaign that delivers i mpr oved pu bl ic and professional awareness of ADHD as a neurological con dit ion t h at is fou nd i n all genders, populatio ns and age groups, including i n gir l s, wome n and gender diverse people Recommendation 5 .................. .. ............. .. ............. .. .......... .. .. ............................ Page 8 Implemen ta tio n of policies and prog ra mm es (includi ng resear ch and trai ni ng) to address t he bar riers t hat are specifically prevent ing ADHD/AuDHD gir l s, wome n and gender diverse people fr o m access i ng an ADHD diagnosis. Recommendation 6.................. .. ............. .. ............. .. .......... .. .. ............................ Page 9 Implemen ta tio n of policies and prog ra mm es (includi ng resear ch and trai ni ng) to address t he bar riers t h at are specifically preven ti ng ADHD/AuOHD girls, wo me n and gen der diverse people from accessing supports after an AD HD diagnosis. Recommendation 7.................. .. ............. .. ............. .. .......... .. .. ............................ Page 9 Inc re ase funding, t rai ni ng for tea ch ers and availabi lity of neuro -affi rming school-based ADHD supports and services for ADHD/AuOHD st uden ts and families. Recommendation 8 .................. .. ............. .. ............. .. .......... .. .. ............................ Page 11 Prio ri t ise t rai ning for G Ps and ot her releva nt allied h ea lt h professional s, whi ch i n dudes a specific focus on h ow ADHD and AuOHD can present i n gi rls, wome n and gen de r diverse people, and wh ic h addresses and puts an end to current stereotypes, gender bi ases, outdated attit udes and t he misdiagnosis ex 1 periences of this coh ort Recommendation 9 .................. .. ............. .. ............. .. .......... .. .. ............................ Page 13 Improve affordability and access i bility of ADHD medication for adults, and ot herwise i mpr ove GP trai ni ng on AD HD medication to reduce misin format ion and st i gma Recommendation 10 .. .. ............................... .. .......... .. .......... .. .. .. .......... .. .. .. ..... .Page 14 Engage with neurodivergent-led organisations to improve all services (includ ing ed ucation, empl oy me n t, m en ta l he al t h and h ea lt h sectors) to be neuro-affirming and to better m eet t he complex support noeeds of ADHD/AuOHO girls, wo me n and gen der diverse people. Recommendation 11 .. .. .............................. .. ........... .. .......... .. .. .. ............ .. .. ........ Page 15 Recognise ADHO as a pri mary disabi lity und er t he NOIS. Recommendation 12 .. .. ............................... .. .......... .. .......... .. .. .. .......... .. .. ........ Page 19 Yellow ladyb u gs supports the r ecommendation s f rom t he Australian ADHD Professionals Association 's Australian evidence-based d inical practice guideli ne fo r ADHD Appendices .. .. .. ........ .. .. .... .. .. .. .......... .. ........................................... .. .. .. ......... Page 20 Assessment and support services for people with ADHD Submission 159 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . . . . . . . . . . . . .. Ye l low Ladybugs Inc. ABN 19 135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs. com au Co mm i ttee Secr et ary • • • • Sen at e Co mm uni ty Affairs Referen ces Co mm i tt ee Email: community.affai rs .sen@aph.gov. au 9 June 2023 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ~ .. ••••• Yellow Ladybugs Submi ss ion: Assessment and Support Services for People with ADHD Introduction Ye llow Lad ybugs is grateful for the o pportun i ty to make a su bmi ss ion to the Senate Inqui ry i nto Assessment and Support Services for People with ADHD. Ye llow Lad ybugs intends to further i ts stated m i ss i on to i mpro ve the lives of aut istic girls and w omen 1 and gender diverse individuals by ensuring that the y are seen, heard, supported and valued . W hile Ye llow Lad ybugs pr i mar ily represents aut ist ic girls, w omen and gender diverse people, many members of our communit y are al so diagnosed or i dent ify as ADHD. Our experience reflects current research w hi ch est imates that 50% to 70 % of autistic people are also ADHD. 2 In th is submis si on , w e will be focussi ng on the intersection bet w een being aut ist ic and A DHD , offer ing th is as a unique perspective to th is Inquiry. Specifically, w e will be sharing the experiences of our tw o key cohorts of our c ommun ity : parents of gir ls and gend er d iv erse young people w ho are diagnosed or i dent i fied as aut istic and A DHD ; and adult s and young people w ho diagnosed autistic and/ or A DHD or se lf-i dent ified aut ist ic and/ or A DHD. In th is subm is si on , w e have chosen to use the term AuDHD reflect the experience of being both aut istic and A DHD . We w ill a ls o refer, w here relevant to the Yellow Lad ybugs A DHD /A uDHD co mmun ity, recognising that w e also support w omen and other adult s w ho are A DHD but not autistic, as w e ll as those w ho are both O ur s ubm ission reflects both the lived experience and the professional expert ise of the Yel low Lad ybugs A DHD /A uDHD communit y. We have a deep understanding of w hat our communit y is asking for . We request the opportunity to speak at the Inquiry, to ensure that the part i cu lar v ulnerabilit ies and chal lenges of A DHD /A uDHD gir ls, w omen and gend er diverse people are addressed adequately dur ing the Inqui ry QUOTE: AuDHD women and girls hav e been overlooked for many reasons including pre vailing stereotypes of what autism and A DHD look like, including the overlap, t he gender bias of diagnostic tools and t he way we have been socialised and view ed in our society. We have been missed and had our needs unmet or invalidated because of our more hidden or internalised presentation. The impact of this overs ight extends well beyond access to diagnosis and exposes the layered vulnerabilities our AuDHD communi ty face. KATIE KOULLAS, CEO, YELLOW LADYBUGS, LATE-DIAGNOSED AUTISTIC-ADHD 1 This s ubm i ssi on uses i dent i ty - fir st language w hen discussing aut ism, as th is is the prefe rence of the maj ority of the auti stic commun i ty and reflects our s tatu s as an aut ist ic-led organis at ion. For consis tency , w e use i dent i ty-first language w hen di sc u ssi ng ADHD, although w e recognise that there is not the same level of consensus on th is in the ADHD commun i ty as there is in the aut istic c ommun i ty 2 Hour s C, Recas en s C, Baleyte JM . ASD and ADHD c omorb idi ty : w hat are w e tal king about? Front Psychi atry . 2022; 13 :837424. do i: 10 .3389/ fps yt .2022.83742 1 Assessment and support services for people with ADHD Submission 159 2 We are deeply grateful to the individuals who have contributed to this submission. We acknowledge their generosity in documenting and sharing their lived experience in the hope that we can begin to better support the ADHD/AuDHD community to access timely and appropriate assessment and services throughout Australia. Listening to our community it is clear to us that many ADHD/AuDHD people feel under supported, which has an impact across all facets of their life including education, mental health, physical health, family/relationships and employment. “As a high masking woman it has been extremely challenging to get support. It continues to be challenging because of the stigma and lack of awareness about ADHD and its many presentations. I may look fine, but I am not, and if I get to the point of asking for assistance it is because things are extremely dire. My story is not uncommon, unfortunately.” QUOTE FROM YLB SURVEY We are hopeful that as an organisation committed to the neurodiversity movement we can continue advocate for improved identification and support services for all ADHD/AuDHD people, because we know that when properly supported, our community can thrive: “I’m sure my story is probably very similar to lots of other women and girls with ADHD. I could talk for hours about the struggles and the sadness I went through as a small child, a teenager and an adult woman. But I would actually really like to focus my story on the positivity. Yes, it is taking me awhile to get to the end point, but ADHD people can be strong and can have really amazing strengths - we are deep thinkers and we are creative. We are visionaries. We can be excellent in chaos and chaotic situations. We have strength and stamina. I never gave up on my dreams, and I believed in myself eventually and for me personally, my career is a success.” QUOTE FROM YLB SURVEY About Yellow Ladybugs Yellow Ladybugs is an autistic/neurodivergent-led non-government organisation with strong bridges to the community. We are dedicated to the happiness, success and celebration of autistic girls 3 , women and gender diverse people. We believe all neurodivergent individuals deserve to be recognised, valued, accepted and supported in order to have agency over their own lives. While our primary focus is on connecting, supporting and advocating for autistic girls, women and gender diverse people, we have long recognised that many members of the Yellow Ladybugs autistic community are more broadly neurodivergent, and ADHD in particular is a very common co-occurring experience. We also represent families who are multiply neurodivergent, and know that it is a common experience for AuDHD children to have parents and siblings who are autistic, or ADHD or both. Yellow Ladybugs is an inclusive organisation, and while we have a particular focus on neurodivergent girls and women, we recognise all genders and welcome trans and gender diverse neurodivergent individuals into our community. As a disability-led organisation, our leadership and wider team are almost entirely neurodivergent, and our team members’ lived experiences directly reflect the close intersection between autism and ADHD. 3 This includes cis-girls, transgender, non-binary and gender diverse individuals, and anyone who was socialised, or identifies as female. Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • • • • • • • • • • • ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 3 Background Throughout this submission we will be advocating around three key points: 1. Gender bias and gender stereotypes are a significant barrier for ADHD/AuDHD girls, women and gender diverse people in accessing diagnosis and ongoing supports and services. Our commitment to changing the common misconceptions about how ADHD presents and who exactly it effects will be addressed in detail throughout this submission. 2. Lived experience needs to be prioritised when addressing the specific needs of the AuDHD community The combined experience of being autistic and AHDH is currently not well researched or understood, especially in relation to girls, women and gender-diverse people. Rather than looking at potential biological or neurological reasons for this overlap, we believe it is important to instead focus on understanding that “people who have traits that stretch across both autism and ADHD diagnoses often face more serious challenges than people with either diagnosis alone 4 .” Improved understanding and knowledge requires a commitment to supporting AuDHD-led organisations and engaging in genuine co- design in research, policy development and programme delivery, acknowledging that lived experience is a fundamental component of evidence-based practice in all these areas. 3. The neurodiversity paradigm must underpin research, policy development and programme delivery: ADHD (along with other neurodevelopmental disabilities including autism), can and should be seen through the lens of disability, but not disorder. We are advocating for change from the position that all steps taken to improve access to diagnosis and ongoing supports for AuADHD people should be neuro- affirming 5 and neuro-accessible 6 . We support the many voices in the ADHD/AuDHD community who do not subscribe to the notion that their neurodivergence is a “disorder.” An acceptance of different brains is part of understanding that neurodiversity is beneficial to all people. Those of us who are neurodivergent should be welcomed and supported without being labelled as disordered. We want all neurodivergent people to be properly supported according to their needs, and to build a society that values and empowers the neurominority (rather than the notion that neurodivergent people should aspire to live, learn, work and socialise in the way that the neurotypical majority do). The neurodiversity paradigm also embodies the social model of disability, and the recognition that it is our society’s systems and attitudes that are responsible for the challenges experienced by neurodivergent people including barriers to diagnosis, lack of inclusion in school and employment and access to support services. Yellow Ladybugs - Community Survey on ADHD/AuDHD Experiences “I wanted to make sure that I wasn’t imagining things. Or making things up. I wanted to know that there was actually a real reason for being the way I was, not as an excuse but to stop myself from going crazy, feeling like a complete failure 4 “Decoding the overlap between autism and ADHD” Spectrum News, 7 February 2018 https://www.spectrumnews.org/features/deep-dive/decoding- overlap-autism-adhd/ [Content Note: This article includes pathologising language] 5 Neuro-affirming means honouring difference, e.g, considers neurodivergent identity and validates neurodivergent culture. It doesn’t try to fix, change or suppress our natural self nor encourage neurodivergent people to mask in order to pass as neurotypical. 6 Neuroaccessibility is when the needs of neurodivergent people are specifically considered, and products, services, environments and systems are built or modified so that they can be used by people of all neurotypes. (Annie Crowe) Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • • • • • • • • • • • ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 4 and feeling like a terrible mum. The medication has been life changing. Absolutely incredible and now I have to deal with the grief of ‘what could have been’ had I been diagnosed younger and given the support I needed back then when I was making career choices, study choices. Being steered away from doing what I wanted to because of perceived weaknesses I had. I’m tempted to go study civil engineering now at the grand old age of 38, knowing that the challenges I faced previously have a reason, and therefore a solution. But I’m so old, I have kids now, I have bills. It’s causing such a feeling of loss.” QUOTE FROM YLB SURVEY In order to gather relevant lived ADHD/AuDHD experience for this submission, we developed a survey for the Australia-wide Yellow Ladybugs community. This was a rich and detailed survey, designed to collect both quantitative and qualitative data, and to allow respondents to provide long form answers. We had over 570 respondents (the majority of whom have the dual experience for themselves and/or their children of being AuDHD) which has allowed us to do a detailed analysis of the specific needs of our community, and their experiences into accessing an ADHD diagnosis and ongoing supports or services. We will share our survey results throughout the submission. A more detailed report is found at Appendix A. Key findings: 97% of respondents identified as female or gender diverse 60% of respondents were in the age bracket 30-49. There is a clear trend that many of our respondents are women who were late-diagnosed as ADHD/AuDHD in their 30s and 40s. 31% of respondents are ADHD diagnosed or ADHD self-identified (no other diagnosis or identification) 45% of respondents are diagnosed or identify as both ADHD and autistic 24% identified as autistic but suspect they are also ADHD 43% of respondents were ADHD/AuDHD themselves and caring for ADHD/AuDHD children 70% of respondents said they had trouble accessing an ADHD diagnosis due to both cost and the wait time for qualified specialists. 40% of respondents indicated that they were initially dismissed when seeking ADHD assessment, and believe that is due to gender bias and also ageist assumptions that “people grow out of ADHD” Recommendations Yellow Ladybugs welcomes the opportunity to participate in the Inquiry into Assessment and Services for ADHD people and is committed to ensuring that the particular experiences of the ADHD/AuDHD community of girls, women and gender diverse people specifically addressed as part of this Inquiry. The recommendations are based on the Terms of Reference for the Inquiry. They are informed by our experience and our deep interest in shaping and creating change. 1. Nothing about us without us Recommendation 1 : Prioritise input from ADHD/AuDHD-led organisations and ADHD/AuDHD individuals and their families throughout the Inquiry. As a disability-led organisation, Yellow Ladybugs would like to remind the Inquiry of the importance of ‘nothing about us without us.’ Specifically, that direct engagement with ADHD/AuDHD people and the disability-led Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • - . .. . . ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 5 organisations who advocate for them, is of critical importance in ensuring that the needs of the ADHD/AuDHD community are adequately addressed during the Inquiry. 2. Barriers due to impact of gender bias in ADHD assessment, support services and research Recommendation 2: Implementation of ADHD/AuDHD-led or co-designed research programmes focused on addressing the gender bias that currently prevents many girls, women and gender diverse people from being able to access ADHD assessments and support services. Recommendation 3: Implementation of AuDHD-led or co-designed research programmes that explore the specific needs of the AuDHD community, including girls, women and gender diverse people as a marginalised group within this community. Recommendation 4: Implementation of a neurodivergent-led national campaign that delivers improved public and professional awareness of ADHD as a neurological condition that is found in all genders, populations and age groups, including in girls, women and gender diverse people. “My daughter was diagnosed with ADHD at 21, even though when she was three, I had known there was something going on, but several health professionals and specialists told me she couldn’t possibly have ADHD or be autistic because it only affects boys . I learnt a lot about myself and my family’s behaviours whilst going through the diagnosis process with her and realised I was also ADHD and autistic, so also got a formal diagnosis for ADHD”. QUOTE FROM YLB SURVEY “I have been medicated for depression on and off my whole life, feeling like it was never really the answer. I pursued assessment after researching ADHD and realising all my symptoms fit . It was never suggested by anyone that I may have ADHD, as I was a "well-behaved girl ." QUOTE FROM YLB SURVEY “ My daughter had two years of teachers telling me she was just like any other girl as they didn’t know the symptoms aside from stereotypical ones . As a parent after my own research from having multiple children with ADHD, I began to question my own struggles, emotional dysregulation, and executive functioning. I was hoping a diagnosis would help me to understand my own struggles, which would then help my ability to help my children.” QUOTE FROM YLB SURVEY “It took so long to get a diagnosis for my daughter, battling GPs who were convinced it was just a condition “for boys” with gender biased assessments and community views. I was told every assessment that my daughter “sits in the gap” - whatever that means - and I was determined for her to matter, for her to have a chance to thrive, not simply “fall through the cracks” in an inadequate system of care . It takes a village to raise a child and guess what - there are girls in this village too!” QUOTE FROM YLB SURVEY “If someone, anyone had of been educated and aware of ADHD in girls when I was a child my life would be so much different now. I feel like my parents and teachers failed me because they were unaware. They saw the signs but couldn’t connect the dots. Now I am on the right medication and have been able to learn about my disorder I have stopped taking antidepressants, my anxiety and depression is greatly reduced. I am able to work towards improving my disordered sleep/eating, emotions and behaviours effectively, as I understand how my brain functions more.” QUOTE FROM YLB SURVEY Our survey results confirm that gender bias is a significant factor in delaying an ADHD diagnosis for many girls, women and gender diverse people, including those who have already been identified as autistic. As is the case with autism, gender stereotyping leads to ADHD girls, women and gender diverse people being misdiagnosed, Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • • • • • • • • • • • ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 6 misunderstood or missed completely. Our survey data also confirms that ADHD/AuDHD girls and women are often initially misdiagnosed with psychiatric conditions including anxiety disorders, bipolar disorder and other personality and conduct disorders. The outdated stereotypes that inform this gender bias can be found in screening process, access to referrals for diagnosis, the assessment process itself, and in accessing supports and services post diagnosis. In support of our survey findings, we also refer the Inquiry to the AADPA Guidelines, and specifically the recommendation that: Clinicians should be aware that ADHD could be under-recognised in girls and women and that they: - Are less likely to be referred for an assessment for ADHD - May be more likely to have undiagnosed ADHD - May be more likely to receive an incorrect diagnosis of another mental health or developmental disorder such as anxiety or depressive disorder 7 Key survey findings on gender bias Gender bias exists across all presentations of ADHD (Hyperactive, Inattentive and Combined Type): Girls, women and gender diverse people do not fit into outdated ADHD stereotypes due to their gender. It is common for this cohort to initially experience misdiagnosis with other mental health conditions. For example, if a woman presents with hyperactive behaviours this may be first seen as a generalised anxiety disorder or even a mood disorder such as bipolar disorder (where hyperactivity is seen misdiagnosed as manic symptoms). Hyperactive behaviours are also dismissed in girls and women where they are internalised (eg having a racing mind) or due to the way females are socialised: ‘she is too chatty’, ‘she is flighty’ or often just ‘she is just too much’. Inattentive type ADHD being missed in girls and women is particularly common. Outdated ADHD stereotypes mean that often these girls and women are seen as “vague” or “lazy” or “stupid” (lived experiences identifies these labels as the most common) or being a ‘day dreamer’. Women and gender diverse adults face an additional barrier based on their age and outdated ageist attitudes that ADHD only affects children. Many of these adults report being the same ADHD child but that due to a lack of understanding around ADHD at the time, ADHD was never discussed with them or their parents Gender stereotypes are also a barrier for girls and women with co-occurring conditions/dual diagnosis: Those who may already have another diagnosis such as being autistic have reported difficulty in obtaining an ADHD diagnosis, and may also struggle to have mental health conditions such as PTSD and CPTSD recognised, or separated from their neurodivergence. 7 https://adhdguideline.aadpa.com.au/about/recommendations-summary/ Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • • • • • • • • • • • ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 7 Many of our adult ADHD/AuDHD survey respondents shared their experience with being misdiagnosed with mental health conditions: “I knew something was wrong. I'd read a few articles from ABC News about women with ADHD and their struggles with 'adulting' and saw myself in every person interviewed (several articles over several years). I had been struggling more and more with my mental health, and on top of my Major Depressive Disorder, Dysthymia, and Generalised Anxiety Disorder diagnoses, my GP suspected that I might have bipolar. I did extensive reading/research around bipolar and it just didn't seem like the right 'fit'. It wasn't at all what I was experiencing. Then, one day, my mum and I sent each other the exact same article (within seconds of each other). It was another story from the ABC, specifically about late-diagnosed women with ADHD and their challenges with money. I made an appointment with my GP that week to get a referral fir an assessment. I put forward my argument and reasoning for wanting to seek a diagnosis, and my GP agreed. It then took me 2.5 years, and multiple referrals, to get an appointment with a treating psychiatrist.” QUOTE FROM YLB SURVEY “I always suspected something was wrong. I had burnout and major depression in 2009 and was diagnosed with anxiety and social phobia. In the past few years more information regarding the presentation of ADHD has come into social media, leading me to question it. I was seeing a counsellor for anxiety and life improvement, we talked about anxiety, and she realised that as I don’t have any physical anxiety symptoms (all on my brain), that it would be worth being assessed.” QUOTE FROM YLB SURVEY “I was originally misdiagnosed as bipolar at 19 and realised I'm actually Autistic and ADHD instead so sought a diagnosis to correct this and try medication.” QUOTE FROM YLB SURVEY “The amount of different and conflicting beliefs of practitioners who are supposed to be “experts” in the field is actually really scary. I was once told I have ALL of the criteria for an ADHD diagnosis, but I couldn’t POSSIBLY have it because I mentioned that I had stayed up the night before and cleaned my house! (I was struggling to sleep due to the impending very long awaited appointment the next day, cleaning is much easier when laying awake thinking is the alternative). But he concluded that if I could clean my house, because cleaning a house at 3am is totally normal I’m assuming, then I couldn’t possibly have ADHD. He then went on to say that I had five out of the ten attributes for BPD, so he was diagnosing me with that and to concentrate of the five I do have, not the five I don’t.” QUOTE FROM YLB SURVEY “Masking” and the internalised ADHD experience We asked survey respondents whether they relate to the experience masking or internalising their ADHD traits, and confirmed that this is a common experience for our AHDH/AuDHD community. Masking is increasingly well understood at part of the internalised presentation of autism 8 , but lived experience suggests that this is also a common experience for ADHD/AuDHD girls, women and gender diverse people. The costs of masking are significant, both in reinforcing the gender stereotypes and dismissing the needs of ADHD/AuDHD people as they appear to be coping or ‘seem fine,’ and the exhaustion/mental health toll on an individual level. 8 Further reading on autistic masking can be found in the Yellow Ladybugs resource: ‘Spotlight on Supporting the Mental Health of Autistic Girls and Gender Diverse Young People’: Yellow Ladybugs Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' . . . . ... .. .. . . . ,. • • • • • • • • • • • • • • • • • • • • • • • ......... " ..... . • • • • • Assessment and support services for people with ADHD Submission 159 8 3. Barriers to accessing an ADHD diagnosis Recommendation 5: Implementation of policies and programmes (including research and training) to address the barriers that are specifically preventing ADHD/AuDHD girls, women and gender diverse people from accessing an ADHD diagnosis. “[My child] was referred to paediatrician when six, due to behavioural issues at school and struggling academically. It took several different assessments over six years to get ADHD diagnosis.” QUOTE FROM YLB SURVEY “I have been seeking a formal assessment for 12 months. I can’t even get on a waitlist. Rejected by one service as I’m 53 yrs old and don’t have my primary school reports. My daughter is diagnosed AuDHD , my friends and family are willing to speak . My psychologist feels I have ADHD.” QUOTE FROM YLB SURVEY “For me as an unemployed single mum it has been an extremely expensive experience. I had to use my savings to access the psychiatrist for the assessment so I could trial medication.” QUOTE FROM YLB SURVEY Many of our survey respondents reported on the difficulty in accessing diagnosis for their child or themselves. • 70% of respondents said they had trouble accessing an ADHD diagnosis due to both cost and the wait time for qualified specialists. • 40% of respondents indicated that they were initially dismissed when seeking ADHD assessment, and believe that is due to gender bias and also ageist assumptions that “people grow out of ADHD.” • 40% of respondents noted that the process of seeking an assessment was overwhelming for them. The shortage of psychiatrists available to diagnose ADHD in adults, and especially those who have an understanding of ADHD/AuDHD in women and gender diverse people is leading to long wait times and often a very long and drawn-out search for a practitioner that is willing to and has the capacity to assess. This process itself can become very overwhelming for ADHD people. Many ADHD people report it taking months to complete next steps such as find a psychiatrist that will diagnose and then calling them to see if they are accepting patients. If the answer is no it can feel like defeat and may take months of more to find and ~----~ ,~=· Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au Q'?7 A OHO and m nsk ino, 1 int erna 't5ing. WP: kn (WJ rl l8 T th s r-.a n pn ::is ent in m!lny differ ent ways. Do vo u rela ;:e to a ny of the foll0'. 11 nq s 1;;1. 1 emems? Ti ck all th at apply or p rov ide mOfe de tail if yo u wo u ld like • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • ' • • • • • • • • • • • • • • • • • • • • • • ,. • • • • • • • • • • .. • ANSWER CHO I CES Trying to hide a mask at $C h ool or oo rk in ord er to rii in ;:J1[1 ilJl pc.:ir to be nc ur ttyp i C.11 R~ h. t. ing lo ri l II dlLI r ,;,, _j0.; li1 1 y LIM::! ti~ uf t.: U111'o 11 r1 i11y (• 1 A rd 1 t.:i:i/ 1 ~ tJ 1i ' Jl:!l' l lry tl is t: UII KK.li m <ii lU ,~ liuy ik~ )' 1.. U t:i::1.1 1 ne ver ct> a::. expected anywo.y) Can so m etimes pr ese nt as DE-ing ov er ana.tytical try i ng to establ sh exac.tl>' 1 1.tlat is exp€<.ted o1 you • • • • • • • • • " Soci al <:V'lx te-ty such as a vai:l t l'l!-'J s tu atio r s t hat m ay mvOlve •· ,;mal l tal k . •1Kl er e you are ,w: h pe,ap le th at yo...1 do n ot kl'IOII,' w~II {li mi t t he faloL1 <Ner s ha i ng pers onal i nform a. t i oo v. it h people th at may not be s een as safe) Man•t AtJI IU peo ple repo rt t €€t u ~ UN o r U I I . 1're pan~ the- rr sef ·~es t or social s1 t 1.1 at 1 ons · Afl e- re yru p rese nt as expecte d bu t t he n ni ay cr as h alter and need t ime to reco•1 €f (su ch ex t ro·.r ert outs i de t he ha.l se ~ ar .d mtr 0'1 ert at ho m eOO¾) r -.J.i A Clrhf>r 11~;:;,:;p p rn • ,wt~ f> XM l fllf""i; To l d.I P.lclSpur 1 U1::it 1 l~ 361 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • RESPONSES 85 71% 312 39 &1% 1'15 08 41% 249 UU 4% ,S[.1 Kl ~L'l',i,, JU4 lJk 1 % 6 I ~ oft% S7 qq If rt w rt~ di ff c:11 lt t r.- o bt rtin rin AnHr> r1i r1 onosis , whrit WP. r P. t hP. m ri in rea so n~? w, I - ·= I ■ - • ""·- .tl • -Mdbr ,.._ -•:• l;,t b ltely ·-· ~ ... .. , .. ..i .• ..... ••b l• • • • • • • •• • • • Assessment and support services for people with ADHD Submission 159 9 approach another therapist. Various roadblocks and complete lack of certainty around timeframes and chances of diagnosis given the assessment process can vary between states and between practitioners. This process can be completely shut down based on discretion and temperament of individual professionals, rather than clear assessment guidelines. Despite this, many of our adult survey respondents spoke about why they have sought diagnosis – and how important this is both for their self-identity, but also in accessing needed supports, including medication. “I have struggled my whole life with being ‘lazy’, ‘ditsy’, ‘’slow’ and ‘naughty’. Despite this I was determined to succeed and have worked hard to appear ‘normal’. A couple of years after my son was diagnosed I looked into ADHD in girls after my daughter started to struggle. Once I realised I had it I sought a diagnosis as I was really struggling to keep it all together. Medication has changed my life and that of my family’s.” QUOTE FROM YLB SURVEY “I always felt like I was failing at normal and needed to find strategies to cope better. The biggest benefit from my diagnosis ended up being self-awareness. Just understanding that I had ADHD helped me to not see myself as a failure and helped me understand my brain, how it works and why I am the way I am made a huge difference to my confidence, self- acceptance and understanding of how to move forward and advocate for myself.” QUOTE FROM YLB SURVEY “My entire life, I felt that there was something about me that made me different from others. - Listening to a podcast and recognising myself in what was being described made me begin to research the possibility. Once I began researching, the similarities were undeniable. I wanted to pursue an assessment. I had to know for myself. - My main reason was to gain a greater insight into myself and how my mind worked. For me, my diagnosis was completely life changing.” QUOTE FROM YLB SURVEY “I was seeking an accurate assessment after having many previous misdiagnoses which did not accurately reflect and explain my lived experience. [I wanted to] trial medication after many years of therapy, counselling and self-help strategies being unsuccessful.” QUOTE FROM YLB SURVEY “Access to therapies that could actually help me function in society and keep employment etc. to feel seen and heard” QUOTE FROM YLB SURVEY “Clarity re: positive identification to support increased self-compassion about our experiences, support my children in having early access to accommodations & develop self-management strategies, & be able to consider medication options.” QUOTE FROM YLB SURVEY AuDHD people find it more difficult to get an accurate diagnosis due to overlap. In addition to our survey, we recently polled 80 AuDHD women and gender diverse individuals, asking them if they experienced more difficulty receiving an accurate diagnosis for both autism and ADHD because of the overlap of traits. A striking 92% said yes. This experience is supported by research which notes that “due to symptom overlap, autistic individuals who also have ADHD might have more difficulty receiving an accurate diagnosis. Many diagnostic scales emphasise symptoms as they tend to manifest when the individual only Ye l low Ladybugs Inc. ABN 19135 641 759 W www.yellowladybugs.com.au E info@yellowladybugs.com.au • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •