Need to know: Becoming an ADHD advocate to help others.
ADHD advocate: Support for parents
Q1. Every family has a unique and different story. Tell me a little bit about yours?
I am a passionate ADHD advocate. I was born in 1975, Sydney, Australia and grew up in a single parent family with my mother, brother and sister, due to the unexpected death of my father in a motorcycle accident, on his way to work. He was 37, I was 5. My mother was 27 and had 3 kids under 7, and a widow.
I spent my childhood in Brisbane. My family were not well off, at times, struggling to makes ends meet.
After school and various short-term jobs, I became a Croupier leading to opportunity for travel. I worked on cruise ships in my early 20’s, travelling the world. I then landed in the UK, changing profession, and spent a decade as a Police Constable in the Metropolitan Police Force in London.
Working as a Police Officer was rewarding and offered diversity of daily activity. Whilst there, I met, Bob ‘The Bobby’, who is my current partner and we have been together about 18 years. We wanted a family together. I wanted to bring children up in Australia. Bob and I moved back to my home state of Queensland, where we now live on the Gold Coast, and I work as, a Private Investigator.
I was diagnosed with ADHD, at 40 years of age, after my first son was diagnosed ADHD, at age 6. My partner and second son have also been diagnosed with ADHD. Years of misdirection, myth and stigma, led me to researching ADHD for five years, and it became evident to me that ADHD is a prevalent childhood disorder that still remains misunderstood, dismissed and unsupported.
The difference in early diagnosis and treatment versus not, is stark, and can be life and death.
I am helping to create a better world for my children, by writing a series of books about a Sam the Squirrel with ADHD. I am the ADHD Whisperer and I run a support group on FaceBook with close to 10,000 people in the group.
I have setup SAVED, a charity registered with the ACNC for children and their families with possible unidentified ADHD and learning differences to receive FREE early intervention screening in education. It is already saving lives, time and money.
None of these rewarding achievements could even be attempted, let alone achieved, without firstly identifying and diagnosing my entire family with ADHD and then medicating us all.
Q2. After speaking with many parents of neurodivergent kids, I’ve found that most stories include a very long road with many specialists and allied professionals’ appointments to get a diagnosis. How did you go about getting your child assessed and what did the diagnosis mean to you and your family?
Our journey to diagnosis is long and painful. I was a first-time parent when my son was born and I experienced a lot of difficulty with him in many areas, including sleep and feeding. The midwife told me that I had ‘a wild one’ and she laughed out loud at his feisty attitude. He was only a few weeks old at that stage.
Each time I reached out for help. Good intentioned people dismissed me and explained the issues were because I was a new mother, and I might be overly anxious. I was consistently dismissed. Other times I reached out to the GP and I was either dismissed or sent on a parenting course.
By the time our first son was ready for school, we were dreading it, because he already had bad patterns of behaviour and we had already started to limit what we could do, and where we could go.
When our son started school, he got into trouble more often than others, and he was suspended, even in prep. We spoke to the school guidance officer and we continued to seek help from various GP’s and or a psychologist or counsellors.
We, as parents often wore the blame, or we were given ridiculous ideas, or ideas we had already tried several times and failed at.
Finally, at the end of year 1, we had our child booked into the local university psychology department to do some testing. We had also waited the very long wait period, over 12 months, to see the public paediatrician at the public hospital.
Both the paediatrician and the university came back with a result of ADHD. I knew nothing about ADHD and found it overwhelming and difficult to accept.
This started my journey of reading every day and learning as much as I could on this debilitating and extremely common, neurological, lifelong condition.
The most challenging part of our journey is the complete ignorance from the health and education sectors. There is so much myth and stigma that it is actually preventing people from getting the needed help and support and actually causing more trauma.
When our son was first diagnosed, we went through a grieving process. We were shocked and sad for the life we thought we would have. We were relieved it was not our parenting on trial anymore and we were angry at the lack of support from the most important sectors of health and education. I truly believe the government is responsible for added trauma at the very least.
When it came to medicating our son’s neurological disorder, we were verbally attacked and begged NOT TO ‘DRUG’ our child, by family members. They questioned everything and were negative and not supportive.
Medication for ADHD is one of the worst stigmatised situations, even though it has been possible to medicate this neurological condition from 1937. The medication is one of the most studied and researched of all medications and it is a lack of understanding that continues this negative impacting myth and stigma. When we medicated our son at the age of 6, we were scared but desperate, nothing else worked. We asked the teacher for feedback and were worried the whole day. The teacher explained that our son who could not sit still and listen prior to being medicated had a fantastic day and he did really well, and the difference was ‘night and day’. We had such relief.
It was then our turn to get assessed and diagnosed. The paediatrician at the hospital was explicit in her explanation to us and guided us to good books to read. She explicitly explained ‘ADHD is genetic’. She then paused, whilst looking at us meaningfully.
Who knew it would be so incredibly difficult and almost impossible for us to get diagnosed with this genetic condition? We have spent tens of thousands of dollars and years of our lives trying to sort out our health and our children’s education.
An adult can only be diagnosed by a psychiatrist in Australia and none of them are available in the public system for this purpose. The first psychiatrist we approached was extremely dismissive. No tests were done and based on his opinion of knowing us for 50 minutes he declared we did not have ADHD. I was so angry to continually be dismissed. We were turning to so-called experts and they knew nothing.
We gathered what energy we had left and moved on to the next psychiatrist who specialised in ADHD. He explained he could see it in Bob but would rely on scientific evidence-based testing and not his opinion. Bob was tested and diagnosed with ADHD. I then asked to be tested. Again, I was dismissed. It took more fight and effort than I had. I threw his words back at him and said, ‘how about you rely on the scientific evidence-based testing and not your opinion?’ He gave in and tested. He was gobsmacked at the results. I was gifted and ADHD. It was my intelligence that was ‘masking’ the very real and very debilitating struggle.
Q3. Our communities, schools and society in general are built for neurotypical people. What have been some of your biggest challenges to date and what has helped you navigate them?
The biggest part of our journey has been the educating ourselves and then educating others, so that we can get the support needed and feel accepted and understood in society. We have faced so much myth and stigma from the people that really should know and really should be helping. It has been defeating, energy-sapping and totally exhausting. At times, we have felt total hopelessness.
When our son was first diagnosed, I felt relief that he would be helped. I went to the school and spoke to the special education unit and explained the issue is ADHD. I fully expected them to then explain how they would support us and our child in his education. I was dismissed and said that ADHD was not funded for extra help in education.
People really do not understand the impact this neurological condition has on people. I have a list of dead people, who have died due to ADHD, it is over 150 people long and over half are young children.
With my ADHD comes persistence, thinking outside-the-box and hyper-focus. I have intense feelings that motivate me. I have passion and enthusiasm. I have a ‘Ferrari brain with bicycle brakes.’
It is my ADHD that is saving us, our family, and every person I can collect and teach along the way. We are a community.
It took a few years but the Head of Special Education at the primary school now receives extra education material from me to use to educate his teaching staff. He is now ‘on-the-ball’ and actively helps other families with ADHD.
The first psychiatrist that dismissed us, received a personal package from Australia Post that only he could sign for. It contained a 6-page letter and copies of all testing and results of our whole family. The overarching message of my package was to NOT DISMISS the next person, NOT RELY ON OPINION, to understand that seeking assistance from a psychiatrist is one of the last, most desperate steps and not one of the first. I received an apology letter and a promise to not be dismissive and to rely on the evidence-based testing in the future.
Over the past 5 years, I have actively participated in advocating for all ADHDers, and I have witnessed a slow, but increasing pace of change in understanding this significant, debilitating and prevalent neurological condition. There is still a long way to go but we are at least off the starting line and taking steps forward. I do this for my children, they deserve a better world. I do this for all the adults who resent being diagnosed as adults because they have grief and regret for what could have been, had they been supported, and for what trauma could have been prevented, had somebody identified and treated them.
I do this to help fight the school-to-prison pipeline, to lower cases of domestic violence, to decrease suicide rates and to prevent people who are forsaken trying to self-medicate with alcohol and illicit drugs.
Q4. I understand that advocacy is really important to you. Can you explain what you are doing in schools and why?
After recognising and understanding ADHD and its comorbid conditions, I could see others suffering, especially children and their parents. I could see the families and the teachers floundering for help. I wanted to prevent them from going through the trauma and hardships that we went through and I had the knowledge, ‘lived experience’ and compassion to help them.
I could not understand why the Australian Government were not listening to the experts. There are numerous reports out there on the ‘state of our children and the education system’ and the recommendations all recommend early intervention for saving lives, time and investment.
They do early intervention screening for sight and hearing in schools. I know the eyesight is to detect issues that appear in approximately 2% of the population. I read that they spent $14 million on eyesight testing alone, just in Queensland and it was proven successful.
ADHD and its comorbid conditions affect more than 10% of the population. The government’s own statistics at the ABS says 10.6% of boys have ADHD. This is not even explaining the dire circumstances of neglect the girls have received over the years, as they are under-diagnosed and therefore under-treated and under-supported. This is confirmed by the second biggest group of people being diagnosed as middle-aged mothers, after their children are diagnosed.
I researched what I could do and made it as simple as possible. My object was not to ‘milk’ the already struggling families. I know I would love that holiday but tens of thousands of dollars for health is a priority. I also know through my experience that our health and education systems lack the funding from government. Therefore, you have an inadequate system swamped by demand and not enough supply. I thought about this problem for over a year and concluded that the best way to go about fixing it is to start a charity. Therefore, the funding can come from government grants because they should be helping in the area of education and health anyway and then I am also not profiting from the already struggling families. The next step was how to do it best. All of the reports and recommendations explain we need to go to the people and make it as streamlined and simple as possible because they are struggling with their lives already, we cannot expect them to do more.
SAVED is a ACNC registered charity that acts as a facilitator of information between the health and education sectors. It gets the information to the people who need it in a timely and accurate method so that secondary traumas are less frequent.
I have overcome many brick walls and hurdles and I have been endorsed by the professionals working in the field of child development. One obstacle proving very challenging is that the government who GRANT the investment into the charities do not see the issue and stay blind to the problem. I have put in for funding on numerous occasions and I can confirm that it was funding from the government for disability and not one specific ADHD organisation was granted any investment.
I can confirm, however, that five disability sporting organisations were granted investment, 3 of them related to football. A disabled fishing organisation received grant money, 2 theatre organisations for the disabled received grant money and a sailing organisation for the disabled also received grant money.
There was enough money to go around, the pool consisted of $185 million and there were over 150 organisations that received grant money. But we go back to myth and stigma about ADHD and some health professionals are still not on-board and people cannot see how very dire it is.
I will continue to try and apply for funding, whilst conducting Screening of Attention Variables in EDucation. We have just finished our third school and have a 4th school lined up for the 3rd week in term 3. We are currently working unpaid due to funding issues, but it is worth it.
So far, we have screened 51 children across 3 schools and have a detection rate of over 90%.
We have managed to SAVE the families of these children a minimum of 18 months wait in the public health system and at minimum $2,000 of testing and appointment costs in the private health system. This also SAVES the child when it comes to failing a year of school.
I have setup places for people to donate to us and help us screen these children as it is a minimum of $20 per child. Our beautiful boys aged 8 & 12 have even contributed their savings toward screening other children so they can thrive in education.
If you wish to help raise money on FaceBook as a birthday fundraiser, this is the link:
If you wish to help raise money in other ways, here is another link:
This is our PayPal page to donate to as well:
Q5. I have come to know you because of a wonderful support group you created “ADHD Whisperer” – how did it all start and what did you hope to get out of it?
I started my learning journey immediately after my son was diagnosed and the paediatrician recommended a book called “Understanding ADHD” by Dr Christopher Green and Dr Kit Chee. I read that and sought out help and support on the FaceBook Groups.
There was a lot to sort through, and the myth and stigma is ever-present, even with the people who are diagnosed. I prefer science and fact and want to find easy, simple and maintainable solutions quickly. It was like banging my head against a brick wall in other groups. It can be very overwhelming at the time of being newly diagnosed and I was feeling it. I was frustrated that I had to find everything out the hard way and nobody was helping me.
As I learned stuff, I passed the information on and found it helping others too. A few people told me that I had a talent of making the complicated easy to understand. We are talking about neurology here; it is not an easy subject. It can also be very personal and extremely intense because of lived experience and trauma, not to mention the very intense emotions and reactions, no impulse control and RSD (rejection sensitive dysphoria) that are symptoms of ADHD. I began to be frustrated with the clutter and junk that would get in the way in the other groups. So, I thought I would start a group of my own.
I started my group in late 2018 and only invited a few and really tried to write up some hand hints and tips that make our lives easier. It ‘snowballed’ from there.
I am proud of my ADHD Whisperer group and where it is today. I have many health and education professionals in the group also trying to learn, advocate and support. Many join the group through recommendations and even though it takes a lot of effort to maintain it is very rewarding.
I have met some of the most beautiful people who have become close friends and I have hand-picked some of the most clever and compassionate Admins to help me in my group. I am proud to call them close friends too. We are our own little community, and we help each other when ones of us falls. There is blood, sweat and tears in our little community, but most of all there is love, compassion, support and understanding.
The ADHD Whisperer Support Group is one of the fastest growing ADHD Groups in Australia and it also represents people from over 53 countries worldwide. We have a fantastic track record of support and will continue on this path until the myth and stigma is gone.
I have expanded ADHD Whisperer to its own website and a public page on FaceBook too, so we can educate the public and spread awareness. I can confirm that my knowledge and support has helped both of my children and numerous others go from suspension and always being in trouble to awards and feeling good about oneself. It is a constant fight and a steep learning curve, but the alternative is prison, addiction, trauma and death.
Q6. It’s incredible how many things you have achieved, and I’d love to hear a little bit about the book you wrote “Sam Squirrel has ADHD”?
I decided to write a book to help other families who are struggling with unidentified and undiagnosed ADHD or are at the beginning of their journey having just been diagnosed. It can be a very frustrating and hopeless path sometimes. I wanted a character that children and their parents could relate to with some extra helpful hints and tips at the back of the book.
Sam Squirrel has a frustrating journey, and he shares some of what ‘our kids’ go through in their young lives. Friends of Sam Squirrel also have the ‘comorbid conditions’ that often show up with ADHD and this leads to second and third books that are in the process of editing and illustration right now.
I had no clue how to go about getting a book published, so I investigated a little and found there are 3 main ways to do it. There is the traditional publisher that you sell your manuscript to and they have all the say and all of the costs and you get a set profit. Then there is the DIY version, where you can do everything, with all of the cost, extra time and effort and all of the say and therefore all of the profits. Or you can go for some ‘middle-ground’ where you have a larger say in your book and what direction it takes and how it is marketed and distributed, whilst using the benefit of experience of the publishers and their network of distributors and marketing. I went for the middle-ground and found a great publisher called ‘Little Steps Publishing’ and they have already moved my book into the UK market, and it is selling there too. The UK ADHD Foundation have endorsed my book and it is doing really well.
I am still paying off the investment of the book at this stage and hope to make profit in the future. You can purchase my book from https://samsquirrel.com
Q7. Do you have any book, podcast or other resource recommendations?
I highly recommend watching and listening to Dr Russell Barkley on YouTube. He is brilliant.
I highly recommend Jessica McCabe’s TED Talk and her YouTube channel ‘How to ADHD’.
Dr William Dodson, Dr Thomas Browne, Dr Ross Greene, Dr Ned Hallowell and Dr Sharon Saline are also recommended.
I have my own YouTube channels of SAVED and ADHD Whisperer, where I have made my own little videos to help fight the stigma and educate the public.
I also highly recommend ‘Sam Squirrel has ADHD’ written by me. I put a little extra information in for parents at the back of the book to help.
Understood.org and ADDitudemag.com are 2 really great websites that I use often, and the experts write articles for these sites.
I have also placed a large quantity of files in my file section of ADHD Whisperer Support Group that are available for FREE to help our community with a variety of stuff we deal with regularly. Please feel FREE to join and take what you need –
Q8. Life can be crazy, busy and downright messy and when we care for others it’s super important to put on our “oxygen mask” first. How do you look after yourself?
I need down time, but I don’t often get it. I am grateful when I do, and I like to play games with my kids. I need my girlfriends, of which I have many and could not live without. I would have loved to spend some of the tens of thousands of dollars spent on health and put it towards a much-needed holiday, as it has been a really tough 5 years of personal growth.
I have to often remind myself that – something is better than nothing, and an – all or nothing attitude, is not healthy.
I remind myself that expecting ‘normal’ sets us up for failure and frustration. It did take a little while to learn this, and it is more peaceful setting limits and not expecting the impossible of my children especially when it comes to sensory and anxiety issues.
I cannot pour from an empty cup, so I must re-fill my cup before I am useful to anyone and STRESSED is DESSERTS spelt backwards. I look for rainbows when it rains and look for stars when it is dark and hold on until the storm ends. We cannot stop time or life, but we can try our best with what we have and what we know.
I also find that understanding the traits of ADHD makes it easier for me to use my strengths to help overcome my weaknesses. I also teach these things to my children. I find that knowledge is power and education benefits everyone, so I pursue these avenues daily.
We hope you found that stimulating and gained a greater awareness of using your voice to becoming an ADHD advocate to help others on their own journey.