0 Blogging About Autism: Why Early Autism Diagnosis is Essential

Tuesday, 15 October 2019

Why Early Autism Diagnosis is Essential


She looks at the little red-headed girl in the photo that her granda kept up until the day that he died. She keeps it to try and piece back together pieces of herself that have been shattered by a world that has always wanted to change her. In that picture, she has wavy hair and big expressive bluish/green eyes. At that point in her life, she had no self-esteem and she was struggling with 8 or 9 different disabilities that she didn't even know she had. When she walked into school it felt like she was walking into a battlefield. Each morning she awoke with that same dread and wonder as to what was in store for her today. Stares, glares, name-calling or something else perhaps? Maybe it would just be the soul-destroying feeling of going about her days not being able to play with other children or even relate to them. She wanted so badly to join in and would stare as others happily played with dolls and had conversations with each other.

Slow Processing and Problems with Social Cues are the Kiss of Death to Friendships

She couldn't work out when was the right time to join in with their conversations and even if she could have she felt that all of the people she observed disliked her. She was too sensitive to deal with the pain of constant rejection and the few times she did get the confidence to express herself she was always in trouble for having apparently said or done the wrong thing.  In between all of the school moves and different places, there were only a few people who she thinks may have been her friends. She could never maintain those friendships even though she wanted to. Her mum told doctors and anyone else who would listen that she didn't want any. She did want friends but she just didn't have that built-in toolbox that other children seemed to make use of to build and then maintain friendships.


The Invisible Wall


She had this block it wasn't visible but something just did and still does step in sometimes when she tries to assert herself to communicate or even just complete a simple task. This thing that steps in is autism and it is extremely disabling for her.  She is constantly battling it to do the littlest of things and pretty much always exhausted but she smiles and does her best to act like everyone else as an adult. As a child, she hadn't begun masking fully and she remembers telling one of her bullies that she was disabled. His response was  "you don't look disabled." It feels the same as an adult when people tell her "you don't look autistic" or when they tell her that her autism must be mild because she looks ok.


Bullying Outside of School

People like the bully mentioned previously carried on their bullying in places that were local to her. The bullying didn't only happen to her in school it happened in the streets and sometimes children who were neighbours bullied her too. As an adult, she now lives right facing the school in which her P1 teacher would slap her for not processing things fast enough. That teacher was a much older and very impatient teacher and she often wonders how they let someone like that teacher work with children at all. She was bullied by both adults and children and she was drowning in feelings of instability and fear every single day of her life. 


Always Looking for Safe People


One of her favourite people in one of the schools she attended was the lollipop lady who must have noticed her staring out of the school gate wishing to escape this environment that she couldn't fit into. She enjoyed being around older people who she felt were trustworthy. She remembers the lollipop ladies kind smile and the sound of her voice after she had a stroke. Mostly she remembers the painful feeling when she never saw her again and how lonely she felt.

She looked forward to her chats with the lollipop lady even though she couldn't always make sense of what she was saying. She was a safe person and this little girl was constantly looking for safe people to exist among.  

Imagine you couldn't read peoples intentions or make sense of what they meant every time they spoke to you. Imagine you constantly got tricked into thinking people were your friend but they actually weren't. Imagine people were constantly angry at you and you never even knew what you had done wrong. Imagine you want so badly to make friends and not be lonely but you can't get yourself to that point because your different brain makes it impossible to build or maintain connections with people. Imagine how all of this confusion might spiral and soon you might end up so confused that you begin to mix up kindness with love. Imagine you mix up the feelings of fear with feeling safe and you start to feel safe when you should feel fear. Living in a constant state of uncertainty caused by autism can cause these things to occur. 

 Note

I feel myself beginning to tear up writing this but I am writing it for change. I want so badly for no more children to be that little girl or boy who is misunderstood and left to suffer without a diagnosis. As far as I know, the early diagnosis rates are improving and autism is being caught sooner but there are still people only being diagnosed in their elderly years. Those people are important to diagnose and I have heard people were questioned as to whether it was worth getting a diagnosis at their age. Seriously! This could only be said by someone who hasn't suffered life long with an illness they didn't know they had. 

No child should be left without a diagnosis because they look ok or because they seem too intelligent because autism causes suffering for many people and they should not have to suffer alone because they can pass as normal. Professionals assuming this leads to mental health conditions and depression how do I know? Because that has been my experience of being left to cope with something I didn't even know I had.


Overloaded by Surroundings 

She couldn't process spoken words it was as though she needed to see everything to try and process things and to try to feel safe but there was always so many things to process that she never really managed to.  She was always unable to partake in P.E and so she would be sitting on the grassy mound in the school playground with pencils and paper which had been given to her by a teacher. She would try to focus on them but she could not switch off from the thoughts of "why can't I be like everyone else." She desperately wanted to do those things but her legs and feet got sore and her mind could not keep up or process any of the complex instructions to games.

She attempted a few times but often ended up failing and getting the rules wrong. Eventually, she gave up trying and P.E became a time of isolation.  P.E became a sad and lonely time that she dreaded approaching with each passing day. Some teachers were more understanding than others. Some P.E teachers were actually very understanding. Others were not so nice and one even said: "watch you don't break a nail." That was hurtful obviously that P.E teacher couldn't have known she was autistic because autism wasn't diagnosed yet. However, she was by that point in a school for disabled children and she felt that should mean that the teacher might be more understanding. 
Note

Some people are too quick to assume invisible disabilities are just laziness or stubbornness. This is incredibly damaging to the self-esteem of those who are suffering with them and the reality is that invisible disability is isolating because only very few people actually do understand. I really wish that through writing and sharing my experiences I can help to enlighten the kind people in the world who just aren't aware. I  believe there are many who just don't understand and I hope they outnumber the people who just don't want to or who are happy to treat people like me poorly.


Wanting to be a part of the NT World


 In one of her schools on talent show day, she sang part of your world from the little mermaid. People never realised that this wasn't just a favourite song but that she could really relate to someone who was a fish out of water.



Sea of Sharks with a Few Flounders

 The truth is that this little girl grew very attached to people who seemed to care about her and she loved with all of her heart. She hated when her teachers would change at the end of the year because she grew so emotionally attached to some of them. The kind teachers made being in a sea of sharks (other children) a little less frightening. I guess she felt they were kind of like Flounder or any other friendly animated fish you could imagine. She had points through the day like seeing the kind teachers or eating at the designated eating times that seemed to help her cope. If I can just get to breakfast, if I can just get to lunch, if I can just get to dinner then everything will be ok. That was and still is her thought process in stressful situations she is constantly waiting in very high levels of anxiety until they are over.

 The problem is that the stressful situations are things that most people don't find stressful at all and they present themselves multiple times every single day. This leads to extreme tiredness and when tiredness begins she is more affected by falling over and into things and if she is walking her foot goes from beneath her more than usual. When she is tired her ability to be rational lessons and her negative thoughts increase and spiral. When she is tired she can't process any words at all and she loses ability to show reactiveness to people.  When she is tired she cannot complete the simplest of tasks and she cannot make herself complete things like getting ready in the morning without breaking down crying. She also drops and breaks things more when tired. 


Automatic Rejection


Children her own age seemed to instinctively dislike her and she didn't even know why. It was so lonely to be surrounded by people and yet not be able to engage with them. The few people who did engage with her didn't attempt to for long because she was missing something. They usually got fed up of that something and left her by herself but she didn't even know what that something was. It makes sense that this undiagnosed autistic child would end up all alone amongst non-autistic children. How could they understand that another child could have a different brain? 

Note

Taking into consideration that even adults that I meet now are ignorant of that fact. How could children understand that someone in their class or in the playground could not process the world the way that they are? They couldn't understand me and so they whispered about me instead. They sometimes called me names or even hit me. I remember the few people who I thought were my friends sometimes turning out to be bullies too. Had I been diagnosed then and told them I was autistic I don't think I would have been treated with any more kindness. I told them I was disabled and they were dismissive or cruel.

It is essential that schools are educating children that some children might have differences that can't be seen and schools like the one who told children not to be a target to bullies actually disgust me. 


Endless Anxiety

She remembers feeling a large amount of anxiety from a very young age and she remembers never ever knowing what to do in any social situation. She remembers endless doctors appointments with parents who wanted to find out what was wrong with their daughter. She remembers internalising all of their worries and pain and feeling as though it was all her fault.
She remembers going about her days in constant emotional overload and always feeling like she was close to breaking down. She was overwhelmed by sounds and always very jumpy. Loud sounds seem to become incomprehensible after a while and they lead to her brain going into a panic. She feels like something terrible is happening or about to happen every time she is overwhelmed by sounds.


Neglectful Headmaster 

She loved school and she especially loved reading. She even read at an advanced level at an early age and she looked forward to spelling tests. Doctors and Teachers were right when they observed that she was making progress in terms of her intelligence but they missed something vital. They didn't consider her real needs because they were to busy focusing on the outer layer.


 Her headmaster was quite egotistical and assumed that bullying could never occur in his school. She was assessed by a psychologist who said she was probably the most bullied child in that school. He tried to convince her parents that she was faking illness so as not to attend school because nothing could possibly be wrong in his perfect school. The problem could not possibly be with bullies and it must have been her home life according to him. There were problems in his school and there were problems with her home life. The main problem at that time was that he was neglecting to deal with bullies and the professionals at that point were neglecting to see that she had autism.

 She encountered another headmaster who watched as a pupil threw things at her and did nothing about it. What is going on there? Are they waiting for someone who isn't a bully to become one? What sort of logic do people who watch someone being bullied and do nothing about it make use of?


Wrong Schools

Her confidence would not have been affected by being amongst other disabled children because she thinks of them as no less than herself but it is quite obvious that some professionals are viewing people with disabilities as lesser somehow. She attended a club for disabled people and she liked it there. She did sometimes get overwhelmed by other disabled children and one, in particular, had a crush on her and she couldn't deal with that as she was not emotionally mature herself at that stage and he kept asking her to marry him.

However, she has many happy memories from that place and she did feel as though she fitted in. She never fitted in any of the NT environments. She wanted to very badly and there were some people she thought the world of who are NTs but she could not communicate with them or build lasting friendships because she kept getting confused about social cues and her perception problems meant the bad NTs were able to isolate her from the good ones with ease.


Medical Neglect

Doctors arranged a meeting that included that principle, paediatricians and others in the medical field. Her mum was allowed to ask only three questions. With the first question, she chose to ask what was the extent of her brain damage. She used the second question to enquire if her problems were caused by birth or vaccines. At that point, one of the people attending said it wasn't the birth and walked out of the room. Her mum never got to ask the third question.

They expressed concern that her mum would sue them and they said she had eight or nine different disabilities and that her parents would probably never know what caused them. Twenty six years later she is diagnosed with autism.

Thanks to the help of one of the wonderful people who work with autistic people she was able to lose more than half her body weight and she has maintained that weight ever since. She feels lucky to have had and still have the support of a few people who work with autistic people and thinks they all are wonderful. She also feels neglected by all of the people who could have helped her but never did because she looked normal.  

They said they didn't want to put her amongst very physically disabled people because it might affect her confidence and so they sent her to NT schools. She only ended up in the school for disabled children when her schooling was almost over and the delayed diagnosis and need for support that was not there led to her suffering on a grand scale. She started off physically disabled and doctors said she would never walk or talk and even though she had learned to do both she still had pains and a different walk that got her bullied by the nasty people of the world. Even though she could talk she had severe difficulties communicating face to face and developing relationships or even just asking for help was a challenge. Her struggles were brushed under the carpet because she looked normal to them and was intelligent. 


Struggling with things she didn't even understand and blaming herself because she didn't have a diagnosis. Her life was on a steady and terrifying spiral downwards from the point when she was old enough to understand that she wasn't the same as everybody else. Her parents used the 8 or 9 disabilities that she didn't have a name for to isolate her and take away her freedom. She became almost 20 stone in weight because autism was too strong a tide to swim against and medical professionals need to prioritise ensuring everyone with autism can swim. She wants to emphasise that this applies regardless of what age, gender, race, or part of the world they live in and regardless of whether they look ok or not. If someone has undiagnosed autism they most likely will suffer as a consequence of it. 

 Lack of diagnosis of autism can have a crippling effect on your mental and physical health.


Note

Medical professionals need to stop paying attention to how someone is dressed and pay more attention to the things they are actually struggling with. Pay attention to the inside because if you don't that suicide rate amongst autistic people will probably keep rising and if you care at all you might want to pay attention to this.
I honestly, don't know how I am still here because I considered it many times. Mental health professionals, doctors and anyone else who deals with disabled people should not judge how disabled they are by how they are dressed. Nor for any other superficial reasons. Appearance is not always an accurate indicator of how much someone is suffering.










No comments:

Post a Comment

I welcome comments and questions and hope you have enjoyed reading my blog. Thank you