I realise I have only posted about myself, so far, and this is supposed to be a way of sharing my whole family’s experiences so here is more about them. Well it’s more about the ways in which they differ from each other because as we know autism is not a ‘cone size fits all’ sort of thing.
As I mentioned before 2 of my children have a diagnosis and 2 don’t, yet I suspect they are all on the spectrum. So, I’ll call them 1,2,3 & 4 (one being the oldest) to save confusion! (Maybe I’ll change their names to numbers in real life!? Maybe I won’t call them the wrong name all the time then!)
I will put in a table the issues they may have so it will be clear. There are some traits they all have but in other ways in which they are very different. This is not an exhaustive list but I’ve just picked out some of the main issues.
||Heat, bright lights, loud noises
||noises and clothes (only wears pants at home)
||Certain materials he doesn’t like to touch
||1 and a few she knows but isn’t close with
||No – mainly age related
|Talks to strangers
||Yes if calm
||Takes a long time to come round.
||Uncontrollable crying if criticized or thinks she’s made a mistake
||Unable to regulate, identify or act appropriately to emotions.
||Anger issues, seems oblivious to many emotions.
||Difficult to say at his age
||None but age appropriate
||Yes – some leading to school exclusion
||Very on edge emotionally, at home but not at school
||Yes but at his age difficult to distinguish
||Eats the same foods every day
||Dry foods only, same foods every day
||Very restrictive diet
||Not too bad
||Far from it
||Delayed speech and behind at school
||No seems bright and vocal so far
||Yes but will do if asked
||Usually and not very persuadable
|Mental health issues
|Anger issues (also diagnosed with ADHD)
|Signs of OCD
I know it seems a bit of a mean or odd thing to do like I’m comparing my children but I’m more comparing the way they display (or don’t) autistic traits. This seemed like a good way to highlight the differences and similarities. I think there’s a stereotype associated with autism and it is inaccurate. There are traits, I agree, that ‘most’ autistic people display but the point is just because someone doesn’t have one of these it doesn’t mean they are not autistic. It is a very broad spectrum as we know and just as 2 neurotypical people are very different as are 2 autistic people.
If I added myself to the list, I’m sure I’d be different to all f them too in some ways (even though we are members of the same family). As would all of the autistic people out there I’m sure.
There is a point to diagnosis
Sorry this is a bit of a moaning, ranting and miserable post, I will try to be more lighthearted next time!
Trying to get an autism diagnosis as an adult is incredibly frustrating. Well this is my experience at least and I get the impression it is for many others. I went to the GP about 13 months ago and asked for a referral for an assessment. The doctors reply was “What’s the point? You’ve got to adulthood and you seem to be doing OK so I don’t see any value in it”. Shocking! The more I think about it the more I find it unbelievable. I think it’s perhaps more to do with ‘well we can’t do anything about it and it costs money for the assessment so let’s just not eh’. Luckily I told the GP it was important to me as I needed an explanation for why I suffer anxiety so badly and why I find being around people so difficult and that doing so makes me feel physically and mentally drained. He discussed it with another GP at the practice and thankfully they reluctantly agreed to refer me. I still have not had the appointment for assessment because the service is so over stretched that the waiting list is gigantic. Something I hope that will be addressed now that autism and learning disability have been made a priority for the NHS.
Even more frustrating is that when I took my daughter aged 13 to the GP to ask if she could be referred for assessment he refused. I was wrongly under the impression that it would be easier to encourage them to refer a child as they may still need support to help them through education and into adulthood. I wrongly thought the fact that she has 2 diagnosed brothers on the spectrum might help. But no. His response was “she just seems shy and maybe a bit anxious, see if there’s a counselling service at her school she can access” and basically laughed me out of the door. It was as if he was suggesting that he knew her better than I did from the 2 minutes he spent in the room with her. Why don’t professional listen to parents more!? I really don’t know why they ignore the person who has brought up the child and lives with them every day of their lives and think they know better.
I really don’t think that we are the only family that this has been such a struggle for. It’s as if they are saying if you don’t cause society a problem then we’re not bothered if you are struggling in your life as it’s only affecting you and not bothering anyone else. If you have got this far in life, then it can’t be that bad just carry on as you are.
If you can act normal on the outside when you need to and fit into societies ‘normal box’ then we’ll not worry about you or the damage this is doing to your mental health. It is not even (yet) medically acknowledged that masking autism and trying so hard to fit In socially has a major effect on the physical and mental health of autistic people even though so many people report this as an issue.
It’s just not good enough.
People need to understand themselves and why they feel and act in certain ways in order to feel at ease with themselves. If you don’t know who you are then how can you even be happy to be you? If you are autistic it has a huge baring on why you have certain feelings, why you act in certain ways, why you find some situations really hard and why you are anxious at certain time/in certain places. A diagnosis mean we can begin to make sense of all this and find ways to help ourselves as well as ways we can receive support from others. Without it we will continue to feel confused, helpless, like we’re failing, lose sight of our identity and have no idea about where we do fit into the world. We will only know that we‘re living in a world that we find increasingly difficult to make sense of and never really know why.
I want to make a difference to the world for autistic people, I really do! I’m very passionate about this. However, I’m being held back by autism which is quite ironic hey? I need to contact people, spread the word, be sociable, network etc etc etc. None of these things come naturally to me. I never feel good enough to say ‘hey look everyone this is what I’m doing’ because I’m too worried that I’m doing something stupid/wrong and will be judged by others. I really can’t bare criticism for some reason it makes me very emotional, so I’d rather not speak about my ideas or share them with people I know just to avoid these situations. Even this blog I’ve started writing I have made a facebook page in order to promote and share my posts but have not shared it with my own friends list for fear of hearing negative comments. I’m easier with strangers reading this as I never have to see them or face what they say, I can always delete a comment if I don’t like it. But if its real people I must face who might make comments I can’t deal with it. If someone sat here now reading one of my posts while I was in the room I’d be embarrassed before they had even commented. I would feel judged, think they were sniggering as they were reading, and assume they were thinking, ‘what is this shit!?’
I’ve no idea why this is such a big problem for me. I don’t remember any significant events that happened in my childhood that would have made me this way. The odd comment about my big glasses but other than that I didn’t experience any bullying. This leads me to think that its related to being autistic. An inability to regulate emotions effectively. I hear a negative comment about something I’ve done, even if the comment was intended to be constructive, it would feel negative. But which emotion is it I’m feeling? Ashamed, embarrassed, sad, angry…. I struggle to tell the difference and therefore do not have an appropriate response to it and just cry uncontrollably! I suppose that’s some form of a meltdown? It’s completely over whelming. This hasn’t happened to me for many years now but that’s completely because I avoid all situations where it might happen. I don’t put myself out there, rarely even offer an opinion in case its shot down.
I see this exact same pattern playing out in my daughter. She told me a few days ago some one in her PE class casually commented that she wasn’t very good at whichever sport they were playing and she started crying and couldn’t stop and had no idea why. I’m hoping that because I am beginning to make sense of this now that it will help her do the same and understand why she feels and experiences things the way she does. I’m very happy to be able to support her into adulthood with knowledge and understand, things that were lacking for me growing up. This is no one’s fault it was just a different time we lived in 20 years ago as far as understanding autism was concerned.
It’s definitely something I need to get over if I’m going to make this blog work!
Maybe writing this blog will help me work that out. Sometimes when you see things on paper or hear them out loud they become clearer don’t they? Well at least they do to me. When things are swirling around inside my brain it’s difficult to make sense of them, my head is soup!
So, I know what’s going on but I’m in a place where I can’t make any sense of it or decide what I’m supposed to do about it. It seems that I am some kind of ‘high functioning autistic person’. I always thought I had traits, they seem to run in one side of my family but I never made the connection between certain things I experience in my life and autism. But the more blogs I read and the more I learn about other people’s experiences the clearer it becomes. I’m autistic. For some reason I feel uncomfortable about saying that. It feels (at the moment) like I’m admitting a weakness I have. I’m really not good at accepting I’ve made a mistake or that I’m bad at something and I feel by saying I’m autistic I’m doing that.
I think my worries are mainly down to societies view on autism. When a neurotypical person hears that someone autistic (especially someone who has no experience or knowing an autistic person) they seem to assume this describes someone who is quite profoundly disabled and needs constant care and support with personal needs. Clearly this is a very distorted image as many people on the spectrum (on the outside at least) can appear to be managing daily life very well. The neurotypical population also seem to have the perception that an autistic person cannot lead a ‘normal’ life. Though there are challenges along the way there should be no reason why an autistic person cannot get married, have children and get a good job – do all the things society classes as ‘the norm’. It is these distorted views that affect parents when they learn their child is autistic. Parents quite often become frantic and think they need to ‘fix’ or ‘cure’ their child instead of embracing their child’s unique qualities. (I have been there by the way, I have 2 children diagnosed and I expect the other 2 are on the spectrum too.)
The reason for the title of this piece is, I have masked my real self for such a long time and tried to be ‘normal’ and ‘fit in’ with what society and those around me expects of me that now I don’t know who my ‘real self’ is. I constantly plan what I should say in a conversation before I have it so I know what to say. I avoid situations where I know I might feel socially uncomfortable. I don’t do or say things for fear of someone laughing or making a sarcastic comment (because that makes me feel pretty useless and inadequate). As for feeling or emotions it is a recent revelation to me that I have no idea what they are or how they work. That’s not to say I don’t feel them just that when I do I can’t identify them accurately and therefore do not know what the appropriate response to them is. Realising this for myself has also made me see what my children also experience.
The point is I’ve no idea who I am or who I am supposed to be anymore because in my head I’ve wanted to be something but forced myself to be something else due to the demands of society and now this ‘act’ I’ve put on for so long has taken over whoever I am underneath and I’ve lost her, I’ve no idea if she can be rediscovered and if she can how would I go about this? I’ve really no idea and it’s making me feel quite sad that this has happened. If only I had known what was going on years ago I could have done something about it… hen gain probably not because I would have still had to ‘fit in’ no matter what.