Meet the “hedgehog” tenrec, which isn’t a hedgehog and is more closely related to the elephant. It lives on Madagascan islands, where there are no hedgehogs – and if you saw a tenrec, your first reaction would be to think that it was indeed a hedgehog. The tenrec is one of many examples the world over, of convergent evolution. There are also a variety of creatures that evolve to mimic other creatures to avoid being eaten, and can naturally be mistaken for the real thing. You may wonder why this subject is appearing on an autism blog, of all places. It’s because of the widespread problem people on the autistic spectrum face, in being misdiagnosed and mistaken by health professionals as having mental illnesses. It isn’t always what it may first appear to be and assumptions are dangerous.
I will give you some examples I have recently faced myself, with my (now ex) GP who had such abysmal lack of autism awareness it beggared belief. I have always talked rapidly, not necessarily the whole time, but episodically. It isn’t necessarily a stress reaction, sometimes I just have a lot to say and need to get it out before I forget what it was I was saying. The perils of verbal communication. Rapid speech is a known feature in autism. And yet I was automatically considered mentally ill with severe anxiety with this trait being termed “pressure of speech” being used as justification by this GP.
Likewise, my habit of wearing earplugs on a cord around my neck, to protect my ears in the event of environmental noise due to auditory hypersensitivity (another known sensory issue in autism) this was listed as a reason for some sort of mental health problem. This GP spent a long time falsely attributing my Asperger’s traits to mental health issues and circulating his opinion within a professional network. This is a service failing of massive proportions. Not only did he fail to understand my ASC traits as such, but he refused to provide me simple reasonable adjustments in accessing the surgery, in direct contravention of the Equality Act 2010 and the Health & Social Care Act 2008. I did my best to educate him, by providing him with links and quotes regarding legal responsibilities on the practice, but it was ignored. Instead of doing his duty, he falsely recorded details of consultations and misattributed my traits to severe anxiety. This led to highly inappropriate and unwarranted referrals because he decided that as a parent, this meant my children were at risk, without any cause.
Both my children are on the autistic spectrum. They are intelligent, extremely loved, very well-parented, clean and healthy children. I had chosen to home-educate them for a period, before they were diagnosed as they were unhappy at school and the younger child was not coping there. On the basis of me home-educating, (with, by my own choice, local authority approved provision) and without asking me any questions regarding how it was going and what we did for socialising opportunities, he jumped to erroneous conclusions, decided I was mentally ill with severe anxiety and whipped up a frenzy in the professional network. I knew nothing at the time, only finding out much later when he telephoned me and accused me of exaggerating my eldest child’s school difficulties and of causing both children’s anxiety, ignoring documented evidence from my daughter herself and professionals she had reported it to, that it was her school causing her distress. My eldest child hadn’t yet got her diagnosis, she had recently returned to school and was being bullied there and they were not supporting her anywhere near adequately, they were in fact reducing the level of support she got which was already only lip service. She was having massive meltdowns every day after school, begging me to to remove her from the place that was causing her such distress. In over 70% of autistic people, there are additional conditions, with anxiety being one of them. This GP even asked my daughter herself whether I was causing her anxiety! She said to me afterwards “It’s not you causing me anxiety, it’s the other way round.” in reference to me dealing with her frequent school-related meltdowns and supporting her.
In the meantime, this GP was calling multi-disciplinary meetings with professionals, again unknown to me at the time, citing potential for emotional harm from me to my daughter, because he was so determined to paint me as a neurotic, mentally ill person. And bear in mind, that he knew that I had a diagnosis of Asperger’s syndrome. Her persisted so much with this unprofessional, ill-judged and almost unhinged behaviour, that he was having an effect on other professionals who started to believe him, even with professional evidence available of what my daughter was going through at school being the cause of her difficulties. The stress and trouble he caused for our family was enormous. All because he was unaware about autism, and couldn’t think any differently from what his neurotypical, blinkered, text book mentality told him. And all the time he was continuing this way, he delayed my child getting the right support because he had everyone barking up the wrong tree as to the cause of her difficulties. Everything I was saying, was proven to be true because my daughter was telling clinical professionals what a terrible time she was having at school, and still I got no apology.
I subsequently found out he had made false recording on my health records when I got copies, and lied about his accusations against me. He had even made false accusations against me of “hounding” him that he circulated to a network of professionals, because I sent him 2 emails on his NHS email address – which I checked with NHS PALS was OK to use and that it was secure. I believe he had some sort of personality disorder to behave the way he did, which coupled with his autism unawareness was a recipe for disaster. The shame and further injustice of it is, that I reported him to the regulatory bodies that ought to take action, and they refused – citing his “opinion” was not something they could challenge! Never mind the lies he told, false recording he did and unprofessional comments to other professionals about me or his actions delaying my daughter receiving the right support. And he has withheld some copies of records for the spurious reasons relating to his false interpretations of Asperger’s traits and trumped up safeguarding claims, because of his already disproven emotional harm accusations.
So you see, autism awareness isn’t just about people out there not knowing what autism means, when it’s professionals that have the power to wreak havoc on families and actually cause the very thing they are mistakenly attributing your autistic traits to – anxiety – it’s about huge injustices and abuse of power and something has to be done about this. So my thought for the day is this: