I have been struggling to write recently, not because I don’t have things I want to say or want to share but all the words seem to be choked up inside me, se edge but I am unable to get them out. I am used to this being the case with the spoken word but writing has always been my calming balm to help me sort, organise and share what is going on inside my head. I am struggling with the fact that this isn’t coming easy to me. I have tried writing them down in notebooks rather than through my computer or through my blog as sometimes the flow of holding a pen and writing makes it easier to get everything out to typing but it doesn’t seem to be making any difference.
I would like to be able to say that it is all just because of everything that’s going on in the world right now causing my blockage but the thoughts and anxiety I am feeling isn’t even all related to that. Of course there is a big part of it that is and that’s the easy stuff the write about I can talk about the things covid related that I am struggling with. The fact that shopping has become such an anxiety inducing task due to all the new rules (even though I like rules) and wondering each time I go what the experience will be like this time, the fact that I am hating not being at work and I am really struggling without the routine of this, the fact that I cannot see the people close to me etc. That’s easier. Maybe its because I am home and therefore my brain isn’t keeping as busy which is causing all the other thoughts to circle, for me to struggle with falling asleep and keep memories at bay.
Usually I would claim that one of my favourite aspects of my autism is my memory. I can recall events and moments from my life with such detail still even if it happened years ago. Right now this feels more like a curse, memories swirl around my head and things that happened long ago, and not so long ago are constantly in my mind. This isn’t to say that they are all bad memories, even if they are often related to people I miss and wish I still had in my life the actual memories themselves aren’t necessarily bad. It just means that my brain doesn’t seem to be shutting down as easily. It’s also hard when I communicate with people about these memories and a lot of the time they cant recall, or aren’t really bothered as it happened so long in the past. These moments still mean so much to me, because they don’t feel like they happened forever ago, the feelings I had at the time I can still recall now and therefore the moments still matter to me. They still feel like a big part of my life even if to others they are just an aspect of their past now. Anyways, lots of blabber there but basically this has resulted in my head feeling remarkably full with feelings and memories and thoughts that I just cannot express in the way that I want or need to. Even whilst writing this I am struggling to put into words and explain exactly what I mean. I apologise now for the lack of sense any of this blog has actually made. Hopefully I will be make to normal soon, able to write what I desire.
This should be the prefect opportunity for me to write, I have all the time in the world right now and writing would prevent the boredom and keep my brain busy.
Anyways, continue to stay safe, stay well.
This week has really hit home to me how seeing the world so
differently can make me feel. There are times in my life that seeing the world from
my perspective is a positive and allows me to deal with things differently. It
has helped me to get through issues such as my childhood and I believe allows
me to be the practitioner I am at work, who will do anything for the children within
my care and always give my best to them.
Then comes the time where seeing the world differently makes
everything so difficult and so hard to understand. Knowing the right thing to say
or do and the uncertainty of how overs will take what your saying or doing and
I give everything to the things I care about and that isn’t always
a good thing. I will stand up for what I think is right even though it gets me
in trouble or causes more issues for myself. I know some may say this is good as
I stand up for what I believe but it isn’t always good. For starters I can be
seriously stubborn in my beliefs and views and struggle to see others points of
views when my head is set on something. This means that it can be hard to get
through to me and rationalise with me or help me see the others point of view
no matter who is wrong or right. Once I come to a decision there is a very good
reason I have reached it so trying to turn me around on it is near on
impossible. I am not by any means saying I am always right but I usually have a
very good reason for feeling or believing what I do and getting me to see
otherwise is a difficult task.
I’ve been told that this makes me a very difficult friend.
That I can bring people down and it can be hard having conversations with me
and support me whilst I am in this mindset. I do not know how to take this. I
cannot change how my brain works. I have tried in the past before accepting
myself. I am sorry that I am difficult in this way. I really am. I have spent
my whole life scared to be honest and talk about things because I was afraid of
how people would take what I am saying and that they wouldn’t understand me, I guess
I have always known I don’t see things the same as others, neuro typical’s, even before my diagnosis. For years I strived
and pretended, mimicking behaviour and trying to fit in, unsuccessfully and couldn’t
fathom why I just couldn’t be like the people around me. Why I found it so hard
to understand them and why I couldn’t let go of things or dealt with things the
way I do. It still makes me sad that I can be this difficult. I do not do it on
purpose or to make things harder. It’s the only way I know how to be. It’s the only
way my brain works.
Secondly, I expect others to be the same. I stand up for my
friends no matter what and I get very upset if they wouldn’t or don’t do the
same for me. Not because they don’t care but because they look at things from every
angle, every aspect. Can see both sides of a story or think of the consequences
and do not want to get themselves into trouble or make the situation worse for
themselves. I cannot do that. I don’t think or care about the consequences at
the time. I will stand up for them, say my piece if I need to and then end up
taking the brunt of it come back at me. For example there was a time where online
someone’s partner but a comment on about my friends children. It wasn’t anything
major and could have just been ignored to not cause any further issues and in
fact this is what my friend decided to do. I couldn’t do this. I was outraged
and had to make a comment. I was not nasty or mean or anything but I couldn’t just
let it slide and I would do it again in a heart beat even though I was the one
that then got moaned at.
It is exceptionally hard to put this into words without
naming particular occasions and I wouldn’t want to people to feel names and
shamed because that is not what this is about. It is not about going through
and saying all the times where I thought people could or should have stood up
for me more or anything it is merely about explaining my side of life and how difficult
this particular social aspect can be for me. I have been taught that you do
anything for those you love and care about and that they always come first and
you should stand up for them…yet apparently this isn’t always appropriate or
the right thing to do or way to go about things. How am I supposed to
understand the grey area in between and know when I should do or say something
and when I should just let something slide?
This week I am feeling negative about this aspect of my
autism and that makes me angry too. I know its who I am and that I am striving
for autism acceptance and hating myself feels like I am letting myself down but
it also highlights just how difficult autism can be. I am not raising awareness
because I think that everyone should change their way of thinking to my way, or
anything like this. I am raising awareness but it is important to understand
and acknowledge how difficult and trying everyday life can be for someone on
the spectrum, and the things that you find annoying about them may be the very
things that they are battling hardest to understand.
Obviously this whole blog so far has been about Autism in females in a sense, as I am female but I believe it is important to understand and accept how different autism can present when you are female, or even higher functioning if that’s what you want to call it.
Even though autism is more widely accepted or understood now than what it ever has been before there still seems to be missing or fear in diagnosis in those who don’t scream autism just by looking at them. For those whose signs are less obvious or are better at masking certain aspects. There seems to be a fear within society that suggesting a child or adult may need support when the condition isn’t clear to diagnosis will cause more issues, or upset to the person and the families. As a person who was not diagnosed until adult hood I can assure that although there may be some resistance, denial or anger to begin with in the long run that early intervention is much more important than worrying about what a diagnosis may be or what the families may think or how they may act. It should be easier for these discussions to happen without nurseries, family members or professionals worrying about. I believe that this comes down to peoples understanding and knowledge especially when I comes to conditions such as autism.
Lack of knowledge on the different ways which autism can present itself often make it difficult for people to see or acknowledge some of the signs and can often lead to misunderstanding, thinking someone is merely withdrawn, have behavioural issues etc. I believe this is seen much more with females. More education needs to be given on how autism can present itself within females and the importance of noticing these early signs to allow for the early intervention which will allow support needed to be given, to prevent them growing up in a world where they do not feel understood like I have. To me this isn’t even about the importance of having an actual diagnosis, at the end of the day a diagnosis although an important thing for me, for many is just a word. It is more about the support and understanding for that person than the title of a diagnosis. Therefore even if you do not want to make the call on an autism diagnosis it is important that support is still in place. Ignoring the issue will not make it go away and will not make it any easier for the person to learn, progress, and feel accepted in this crazy world.
I began this as a way of expressing myself but would love to be able to use my experiences and my knowledge to help educate others on how autism presents in females. The lack of knowledge and information in regards to autism in the female population amongst professionals means that many have and will continue to slip through the cracks. I would love to go into schools and nurseries to help promote this understanding and to support families with noticing signs.
I think one of the most important things to remember is that girls will often mask signs and symptoms and are much more adept at imitating others, especially within social situations. As this social aspect is such a huge aspect of an autism diagnosis, it can therefore be more difficult to see the struggles females have in social situations. Girls often want to be more social and therefore understand the benefits of social interactions and often mimic behaviour of the people closest to them. This doesn’t take away the difficulties they have and how understanding different social cues is still a battle. This often results in signs of anxiety and/or depression and with a diagnosis relating to this or personality disorders being given. This was certainly the case for me and then I felt like a failure when none of the medication, treatments or therapies worked for me.
Other signs include:
- The obsessive and immersive nature I have discussed before, from a young age this can present as obsessions, collections and organisations over toys as well as characters.
- Toys being friends. Having relationships with cuddly toys for example. Talking with them, creating little worlds and repeating and playing these games over and over.
- Many people assume that people with autism have a lack of imagination due to the rationality of the way their brain works. This isn’t the case at all. Especially in females on the spectrum. In fact it often can be the case that their imagination is ‘too much’. They become a character for an extended period of time, staying within this role all day at times. Girls will often have a very active imagination, loving mystical and magical books and characters. They may also have imaginary friends. For me I would talk about my ‘family’ and ‘children’ that I had from my imaginary games. I could talk about these as if they were real.
- It is not always the case that we don’t like physical touch (although this is often true at times.) Sometimes the sensory issues can mean that we seek tight hugs, can be needy in being close to others, often not respecting boundaries and for example standing too close.
- High functioning girls often immerse themselves in books and reading. For me this was due to these worlds being easier to navigate, expected to be immersive. I especially love books that come as a series so I can become part of their world, or fanfiction about characters I am obsessive over.
- Females can be very emotional. They often have great empathy but lack the ability to deal with all these emotions.
- Finally, we can be social. Especially due to the ability to mimic behaviours but following this may isolate and need a lot of time alone. Sometimes I just need me time, even if I feel lonely. I can want someone to be with me but need them just to be there and let me be myself, not too close to me, not talking to me too much, just being around.
I hope that some of this gives a greater understanding. I think it is important that we prevent as many females slipping through the cracks as possible. No, it may not seem as bad as how others on the spectrum but it doesn’t take away the struggles that we do have. In fact people have a higher expectation on you to be ‘normal’ respond like neurotypicals do and people tend to have a lack of empathy towards our feelings and reactions during situations. This needs to change. Do not take away the difficulties that I have just because I do not look ‘autistic’. I can assure you I am!