Written by: Danielle Baron, Executive Contributor
Executive Contributors at Brainz Magazine are handpicked and invited to contribute because of their knowledge and valuable insight within their area of expertise.
It is Autism awareness day on 2nd April and it is currently World Autism Acceptance Week. ADHD and Autism fall into the spectrum of “Neurodiversity”.
Autism, or Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that can affect social interaction, communication and behaviour. It is called a “spectrum” disorder because it generally affects people and genders in varying degrees and can present differently in each individual. It is not ‘one size fits all’, which makes it more of a challenge to diagnose. To understand more about why it’s important to raise more awareness for girls and women, it is best to start with explaining how autism is assessed.
The assessment for autism and some other neurodivergent conditions are largely based on the symptoms of boys and men. One of the main tests to find out if someone is autistic is called the ADOS (Autism, Diagnostic, Observation Schedule) test. It was created in 2001 before any extensive research had been done into female autism. Three doctors, Dr. Emma Colvert, Dr. Victoria Milner and Hannah Hayward, at King’s College have been researching how to improve the test to help spot the more subtle signs in women and girls. The ADOS test is a ‘gold standard’ measure of autism because it is the one that is well designed to elicit behaviour that will demonstrate autism. However, girls generally show more subtle and internalised signs and are (generally) better at ‘masking’ than males (to hide parts of oneself to fit in with those around) so will sometimes slip through the net. They may be seen as shy, obsessive, emotional, hormonal, rude, , and fussy eaters instead. They are three times less likely to get a diagnosis, compared to males. According to NHS Digital, there are currently 122,000 people in England waiting for an autism assessment. Autism assessments can cost thousands of pounds and many people cannot afford this. Caudwell Children is a charity that helps to speed up that process for low income families and is a godsend because while parents and children are waiting, it can put a huge pressure on home life and mental health without the diagnosis and subsequent access to support.
In the case of my daughter, it took until the time she was thirteen to be diagnosed with ASD. As a little girl, she appeared to meet all the milestones for a baby, toddler and young child so I had no concerns. She was also my first child and none of my friends had children at the time, so there was no one really to compare her to. I remember, from an early age of putting on her socks, she used to be very particular about their accuracy and turning the top of the sock over neatly. At the time, I thought she was just being careful. She would also complain about labels in clothes or the feel of material. I remember a time, when she was about four, and a few other occasions, where we would take her somewhere new, like Winter Wonderland but she would want to go home and I thought she was just being ungrateful. After a short while, she would warm to these places and then would be alright in the end. As she got older, it was apparent to me, in my opinion at the time, that she seemed quite shy and didn’t want to stand out. I vividly remember a Frozen party she attended and everyone was wearing Frozen dresses. I’d just finished leading a Borough performance competition at Richmond Theatre and my group performed the song: ‘Let it go’. A talented parent had made satin capes for each child and I borrowed one for my daughter – for this party. As soon as we entered the house and saw every girl in the standard Frozen dress, I instantly regretted it. I like to be different and explained to my daughter that it is great to be unique but she didn’t agree at all. But this again, would seem like a normal childhood reaction. Most children like to be liked by their peers.
I remember taking her shopping and the person behind the counter would ask her a question and she would remain silent. I’d prompt her to answer, and sometimes, probably in the rush of things, I’d answer for her. I just thought she was shy and as she got older, I began to think she was rude. She needed a little bit of speech therapy to pronounce a couple of sounds properly, but after a few sessions, she was fine, so this didn’t strike me as concerning either.
As she got older, I started to realise that something was amiss but for such a long time I couldn’t put my finger on it. I found my own mental health deteriorating and feeling overwhelmed with her rude behaviour. I would never have expected ASD and this is coming from a teacher. Of course, now I’m very informed about neurodiversity, but as a school teacher, there was no training at all. For the SENCo, but not for general teachers. Throughout her school life, my daughter seemed to have friendship issues and to be ‘bossed’ around by her one best friend. Who the best friend was changed every few years, but It was always just one best friend and they would do most things – just together. When she was about nine or ten, my daughter’s organisation was all over the place, she would be so slow to get ready and get distracted and she would fidget and forget. I suspected she had ADHD so took her to a private ADHD clinic; the waiting time for an NHS assessment was too long.
ADHD, or Attention-Deficit/Hyperactivity Disorder, is a neurodevelopmental condition that affects attention, impulse control, and activity level.
There are three subtypes of ADHD:
Predominantly Inattentive Presentation: characterized by difficulties with attention and focus, disorganization, forgetfulness, and distractibility.
Predominantly Hyperactive-Impulsive Presentation: characterized by hyperactivity, restlessness, impulsivity, and difficulty with self-control.
Combined Presentation: characterized by a mix of inattentive, hyperactive, and impulsive symptoms.
As part of the ADHD assessment process, teachers need to complete a couple of questionnaires. There is a huge flaw in this system.
The assessment is largely catered to boys’ symptoms.
Teachers are not typically trained in neurodiversity and do not know what to look for in girls.
There is preconception before the teachers even complete the forms and a stereo-typical view of ADHD as being hyperactive and disruptive.
Her year 5 teacher completed the form and could not see what I saw. I remember speaking to my daughter’s year 6 teacher, who pompously replied: “Your daughter doesn’t have ADHD, I know what ADHD is.” She obviously didn’t. Questionnaires from all environments must largely line up and indicate ADHD to get a diagnosis. My daughter’s questionnaires didn’t correlate, due to the way her teacher had completed it without any training or knowledge about ADHD. It was very frustrating at the time, knowing that my daughter had something, and no one could see it, except me, her mother who spent the most time with her. There is a less effective back-up computer test, but on this my daughter was shown to be ‘borderline’ so didn’t get diagnosed the first time.
Once my daughter started secondary school, it was as if a magnifying glass has suddenly been focused on her and the majority of her teachers approached me with concerns about her organisation, lack of participation and homework completion. It makes sense because secondary school is a different ball game to primary school and is more pressurised. I took her for another ADHD assessment – private, costs accumulating. Finally, she got diagnosed with ADD, which would have, in the past, been called Aspergers but has changed again and is currently called inattentive ADHD. The terms keep changing so it isn’t surprising to me that sometimes people say the wrong one.
Finally, we had a diagnosis. She tried medication, but whether she was on the wrong one or took it for such a short period of time, it didn’t have an effect and suppressed her appetite. She was already skipping breakfast so I decided it was best she came off it and she wanted to anyway. In my mind, the diagnosis was just important for support while she was at school.
This leads me to 2019 and the lockdown. The lockdown was very detrimental for many young people’s mental health and my daughter was no exception. Her eating disorder was very insidious and it seemed to go unnoticed for a long time. Her anxiety got worse and she would miss school. Her anxiety was so terrible at one point that she even couldn’t get out of the car if people were walking past or if music was on in the car – I had to turn it off. We went to Portugal in September 2021 and I remember she just wanted Caesar salads for lunch and dinner and I remember feeling stressed having to find places that catered for her.
Hindsight is a wonderful thing! That’s when her eating disorder really started to take hold! After that holiday, she no longer wanted to go abroad for a while and didn’t like the texture of the sand on the beach.
However, she had no problem with this as a child. Eating disorders can cause symptoms of autism because of the lack of nutrients in the body, but also, autism can be a factor for eating disorders – it’s a vicious cycle.
One third of people with eating disorders present autism. Subsequently, I did all I could and trained with the top eating disorder providers to help her – there seemed to be a lack of support for her elsewhere and for the type of girl she was, although we didn’t realise she had ASD then. She is fine now, thank goodness, and I think it is a miracle. She is eating normally now and still presents with autism so we realised that she genuinely did have it and she was diagnosed last summer. On my journey throughout this process, I have realised that there are so many related factors that link to autism. I never realised, even as a previous teacher, that a child can have both ADHD and autism and that autism can be linked to restrictive eating and eating disorders or anxiety and panic attacks. The most presenting symptom of autism in most girls, is anxiety. But of course, not everyone who has anxiety presents with autism. I know so much more about neurodiversity now and have spent a lot of money to learn from the best. It is imperative that school teachers somehow get trained too.
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Danielle Baron, Executive Contributor Brainz Magazine
Danielle catalyses children and adults to rise like a phoenix from the flames 🔥 and to reach their optimum potential. She is an entrepreneur, inspiring 11+ and 7+ entrance exams tutor, rapid transformational therapist®️, business coach for overachievers, a life coach for all, and an NLP Master practitioner, and she is also certified by the ILM.
One of Danielle’s much-loved abilities is being an overachiever because she thrives on the excitement and follows her passion, which is to help people live fulfilling lives.
Over the last five years of her tuition business, Danielle has become extremely popular and respected in the tuition industry and is a mentor and coach to other tutors to help them increase revenue in their businesses, but ultimately to be the best tutors they can be. Her own tuition service incorporates coaching for parents and children throughout the exam process and NLP classes for children to help them with lack of confidence, bullying, and anxiety and to help them focus on the imminent goal of exams and to visualise and believe in their success.
Danielle’s second business, coaching and therapy, has been a long time coming and her personal interest in people and psychology led her to invest in the most high-quality courses to be the best for her clients. For her rapid transformational therapy ®️, she had the privilege of personally being mentored by Marisa Peer, a world-renowned therapist. Rapid transformational therapy is a combination of NLP, CBT, psychotherapy and hypnosis.
It has been Danielle’s personal experiences that have led her to where she is today. At age four, her father died of suicide, which installed in her a determination to help prevent people from ever becoming despaired again. Her best friend passed away at fifteen, which solidified Danielle’s determination to live life to the full. Growing up with a single parent, they struggled with money, but Danielle was very inspired by her mother’s work ethic, which had a huge impact on her.
As a teacher in some schools, the politics and bullying amongst staff were toxic and she suffered from depression, stress and burnout and was treated badly at her most vulnerable time of being pregnant and having a newborn and that’s why she’s passionate about helping teachers. She wishes that she had someone to help her at the time.
She has been through the journey of setting up successful businesses on her own while undertaking childcare as a single parent of two after she divorced and strongly believes anyone can achieve anything they put their mind to with grit, focus, and passion.
