Why aren’t Aspies doing what Aspies do best?

So, hello everyone, first off I want to appologise in case this post is not as good as it should be but I am writing it now both because I was inspired by something I heard and don’t want the idea to run away with me, but I am also writing this now, when I should probably be doing University work because I am at home ill. I seem to have the kind of bug where I feel reasonably ok to do things most of the time but I can’t eat. Not being able to eat (the bug part of the bug) means that, on day four of eating next to nothing, I am very lethargic and feeling a little shaky and weak most of the time. I have done some work for Uni classes but I stupidly distributed my energy today badly meaning that I worked on my own craft project for a god bit this morning and now that I have persuaded myself I should probably do something worthwhile I have totally run out of energy and can’t think properly to do Uni work. Great. So I thought I might as well try and use some time working on a blog post and trying to carry on my good streak of posting. I’m not sure I’ll write it all in one go as I usually do but this is much easier as (in case you couldn’t already tell) I make this up as I go. I like to think it gives a bit more of a genuine feel – especially as I am the type of person that writing my thoughts is much easier than trying to speak them.

Anyway, this post idea came to me when I binged Series 3 of Atypical at the weekend. This isn’t my favourite tv show and definitely not my favourite autism show but I keep up with it. I am not about to talk about this tv show really, what I want to talk about is a fact which I heard on the show. I fact checked this and then converted it into british stats and I can say I wasn’t surprised by the stats but I had hoped they were better.

What were these stats? In the tv programme it was mentioned that four out of five US college students with ASD will not graduate.  In the UK this statistic is slightly better with 40% of ASD University students completing their degree. So 60% of us ASD people who go to University in the UK don’t get to the end of the degree we are studying, to me that number is not surprising but sadening. One of the common things in ASD people is our desire to learn, we have very specialised minds and the ability to learn and focus on things which are very niche, or learn huge amounts of information on the things we love. We are some of the best learners, we are highly capable of being the specialist in a field of knowledge, and yet many of us leave University before we get to the stage that we can become experts. It seems very wrong that an environment where we should feel at home is the same environment we are not staying in.

I didn’t do much research to see if we know why so many of us leave University but I can imagine many of them. There are problems with remembering schedules, remembering to check dates and times, remembering when to hand in work or if a class has been changed. Unlike at High School (or at least the understanding I have of High School) there is no one telling you to write down due dates in your school-issued diary planner. There are no set work times, you are not in the Uni building from 9 till 3:30 each day, you have to do so much work on your own, it is up to you if you learn the materials. Other issues might be in the type of work, it might be complex and hard to get your head around the terminology which your lecturer has talked at you for two hours at a time, you may zone out only to discover the lecturer has asked you a question and then you are stuck, praying that you can think of something that makes sense with only seconds to come up with it.

There is also the social side of University, unlike school you don’t spend five days a week with these people. You might get invited to events at the beginning but after you have declined a few times – because you don’t know these people yet and even if you did sudden plan-changes are a big issue – they stop asking you. You find them joking about things that you don’t understand and soon those people that you thought liked you, well, you start getting hints that may not be the case. You get paranoid about what they might really think of you and it brings up traumatic memories of bullying in the past. The people in your course don’t seem overly interested in talking about the subject you are studying, some you aren’t sure even like the topic, and your other hobbies and things you enjoy are too weird or specialised for these people, you don’t like the things associated with your age necessarily and that is hard.

You see all these examples above? Did you notice that a lot of them were oddly specific? I am 62.5% (so I was reliably told) through my history degree and these are all things I have and still am experiencing. Genuinely I feel I am lucky that I am managing to stay on top of all the hard things that come with University, I understand how so much of it can be overwhelming and a lot of work for us ASD folks. I’m not entirely sure why I am getting through it. I am often surprised when I get out of a termly freak-out-breakdown-emotional shutdown- thing that I am able to surface again, enjoy a little bit of the holiday and then I am bored and in need of going back to Uni. I am already aware that my university schedual which is made up of two fourteen week terms in a year – yes, that’s it! – is having a serious impact on my mental health. I struggle to have a break, I struggle to truly spend a day doing nothing but relaxing, I have a constant feeling of guilt if I am not doing the work I should be doing and the matching anger when other classmates can start work three days before it is due and remain sane.  The intensity of these short terms can’t be good for anyone, the sudden stress and need to focus doesn’t allow for any form of error. I am very glad that this term I don’t have any exams at the end of term because exams don’t give any option to be ill. You have to be a superhuman, you have to get to every class, have read three or more chapters of books per class per week, you have to take a deep breathe before reading essay feedback which is blunt and to the point, often leaving you upset.

I go to a university that has a very good reputation for supporting students with additional needs, and it is very good for the most part, but the support of the university does not necessarily flow on to the lecturers who seem to forget we are living beings. This does make me wonder, however, what it is like in a less supportive University.

We should thrive in an environment which allows us to learn and research the specific subjects we are good at and enjoy but instead many of us are faced with a wall to climb. There is this idea that being an ‘Adult’ automatically means those of us who need support in specific ways no longer have those needs because ‘adults’ don’t. There is no real understanding that we need to transition, we need to have a way of getting through it all at a pace that makes sense and with less assumptions. We need to have social support too, it is tough when you don’t have people fighting your corner. This is something I am learning at Uni that I did not have at College. In my College class most of the people got on well, we were supportive of each other and our lecturers were not only actually present in our classes (unlike many of mine) but they were people, the taught rather than read from a piece of paper, they learned what we found hard and knew about the lives we led. Some members of my classes are very nice people, some are kind and the type I would consider friends but there is only one social group in our class due to its side and almost all members are part of it. A girl that left the course about a month ago confided in me that the course was enjoyable but that she was doing a huge amount of travelling to attend each week and she was feeling down because no one really spoke to her at all. I totally understand her feelings, and feel myself that those I thought of as friends when we were away in Germany earlier this year, didn’t have the opinion of me I thought they did.

The work is tough. The organization is tough. The work is tough. The understanding is tough. The social side is tough. University is tough.

I don’t have an answer to this issue, I don’t know if we could make it any better as much as I would like to. I guess, this is my homage to those amongst the ASD world who have tried University and not failed, but been failed by the system. You did your part, they didn’t necessarily do theirs.

Thanks for reading everyone, I hope this is interesting to you all and I hope you get something out of these posts. Please let me know about your thoughts on this statistic, have you attended Uni? Do you plan to? What you’d name your next pet…? (Genuinely always interested in this last one, but I also miss hearing from you guys, I know you’re out there and I miss you all!) See you all soon 🙂

The Irony of Aspie Friendships

Hi everyone,  I apologise that this post may go up late because it’s one that I want to do properly and I am really suffering at the moment in terms of attention span for Uni work as well as having a lot of problems with Restless Leg Syndrome which is dramatically affecting my sleep and creating a vicious cycle between having to do my work for assignments, and being so tired that my concentration is really rubbish and I don’t want to concentrate because I’m tired and would love to use my attention on easier things. If that long sentence didn’t make much sense I apologise but I thought I would try and focus some of the reasons that I am writing this post on the day it is due to go up, and I can’t guarantee I will be able to finish it in one sitting as I usually do. Anyway, I’ll try and get on with this post and I hope to get it up for you all soon – I don’t want to break my streak of posting frequently!

Over the past few days, I feel I have experienced a typical example of the rollercoaster that is friendships when you are a person with autism, or I imagine, a person who is neurodiverse in general. I’ll start this off which the negative because then the better section is coming.

I’m sure you will remember the huge adventure that was the University trip to Germany last February, well recently there have been whispers of an email coming out soon about the options for the trip this year. There is a group chat which was created for those of us who went on the last trip and I became aware after that trip that there is another group chat which exists and seems to contain almost all members of the class. It was someone’s slip of the tongue that meant I discovered this group because I was not aware of the information that had been in the ‘group chat’. I was saddened to realise that when I mentioned I wasn’t in it an excuse was made about there being various other chats with people and that it wasn’t important. Again, I wanted to note to them all I am autistic, not stupid – I’m aware they obviously do not want me in this group. Back to the chat for the trip, people were speaking about the email and one of those asked if we would send the names of all going on the trip in one list as we did the previous time, one of the other girls said she wasn’t going to be able to go and everyone reacted sadly and were saying she could get a different flight home and other such things. I mentioned I was not able to go this time either and the response was litterally ‘ok, Abigail.’

The more time I spend around this group of people the more I become aware that they don’t really like me very much. I don’t know if there is a specific reason for this or not, but I think it bothers me a lot more than it might have in the past since they chat to me and they were accepting me a lot more into their group last year it seemed. I think it might be a situation that some of the people in the group do like me but that some others – those with the social power – do not. I think it is also made harder because of the way that this class is structured because I am always at the Uni before classes and because there are only about fifteen people in the class routinely it isn’t as though there are a lot of different options in terms of friendships. I also find it difficult at this stage in life I think, I mean that the people my age and life stage generally have very different interests to me and different priorities. In some ways since leaving school, I have felt that my social side is like a train track, I and the typical people were always parallel but at a distance and now their track has veered off in another direction entirely and won’t come back to meet my own for a long time.

It’s funny in some ways, my Mum always points out to me that I wouldn’t want to do the things that other people my age are doing, for the most part, she is right. I wouldn’t want to go to clubs and pubs, to spend evenings drinking and partying, for the most part, I really enjoy the things that I am good at and I am happy to be the person I am. They don’t understand that a lot of what they find easy or things they expect to be doing are not options for me and that some of those options – to be able to drive, to feel trusted as a baby sitter for my nieces, to not burn the house down if my parents are out – are things I dream of having.

Now, before I bring everything down totally I want to broaden this out a little, so here are some of the facts:

  1. A survey by the National Autistic Society in April 2018 revealed that people with Autism were four times more likely to experience loneliness and a 2016 survey found that 79% of autistic people experience social isolation
  2. An article in psychology today lists 13 essential traits of a candidate for good friendship. Of these 13, 9 are common traits in people with autism such as trustworthiness and honesty.

So looking at these, and based on my own experiences in life, autistic people should be brilliant friends to both neurodiverse and neurotypical people, so what are we missing?

There’s only one good way for me to address this question, and as much as the rubbish stuff happens, as much as the rubbish is around all the time and probably always will be, I have to stick to the experience I have had and see the positivity in that. What are we missing? Well, let me tell you about an experience I had in the past month.

About a month ago Holly and I went to an event at a theatre near to us. They were having a Marvel film event which sounded pretty good, to watch the two most recent films back to back, but it was made better when we discovered they were encouraging cosplay. That was us sold, definitely me sold, so we went along awkwardly in cosplay to an event which was not exactly well-attended. We had been there, in a room with only a handful of people each doing their own thing when a girl came up to me, also in a Black Widow cosplay, and asked to take a photo with me. I was delighted – never having had this sort of experience before, in fact often finding that the more niche geekdom around Holly’s cosplays meant people were more likely to approach her. I was even more delighted after having taken a photo that this girl continued to chat to us, and took a big interest in baby Yelena who I had brought with me in a semi-captain America baby costume. I had experienced this before but never around other geeky people – somehow it seems that it is popular at the moment for people to not like babies, both among the nerdy ‘uncool’ population and the general population also.

This was the beginning of something I never expected. The girl – who I will now refer to as Sestra (dunno if she’ll get the reference) – introduced us to her sibling, who I will refer to as Doctor Aspie, and this weekend we met them again. We discovered more and more similarities between the four of us and a level of understanding and acceptance that I think is rare for a lot of people. Sometimes I just know things, sometimes I get a feeling when I meet someone that I want to know this person and that they will be a friend thoroughly worth keeping hold of. All of the people that I have had that feeling around have stayed strong friends. All of these people are still my friends and this small group of people are the ones I know I can trust.

You see, I think that one of the reasons that Aspies are not often friends of neurotypical and socially popular people is because we have the ability to see more than the typical folk, we see a person, we understand pain – mental and physical – we understand what it is to be outcast or to have your honesty twisted against you. We know what it is to have a lot of passion, no matter what that passion is for. I think that comes through in the empathy a lot of us have for animals – especially the animals that others overlook, we don’t need to be the same on the surface to form friendships, we find familiarity deeper down and that means we have a deeper connection. Friends are not a means to an end, they don’t get us from A to B, they travel with us, they stay in our thoughts. It doesn’t matter if we have unique challenges or experiences, they make us people and they build us into the strongest friends.

So, if you have rubbish moments like the first example I gave, think about the times you have seen the second example. Or if you havent had that second example yet, then keep waiting and watching, reach out to others who might appreciate your support, be honest to yourself, be yourself. You will find your friends, those friends who are worthy of your time and understanding, those who can give it back to you. We might be different, we might have quirks and fears that are unusual but we can give more to a friendship than others give us credit for.

Thanks, everyone for reading, I hope this is good and was worth your time and I hope you can relate to this. I would love to hear other peoples thoughts on friendship, tell me about them, whether they are with other people or even with pets, maybe even imaginary friends. We are important, sometimes other people can make us forget that, but then the right people can remind us once more. See you all soon 🙂

 

Are ASD Parents Better with ASD Kids?

A very long time ago, back in the early days of this very blog, I had a post called
the Jellybean. That Jellybean – someone I was both very excited to meet and
had a lot of anxiety towards meeting – is now Big M. Big M will turn three in a
matter of months, which is totally surreal. It’s amazing how quickly she has
grown, how much she has changed and the amount of space she, and now also
her baby sister Little M, take up in my heart. I adore these girls; I love to see
how much they are becoming little people and it is still very special for me to
know they love me in return.
When, after a semi-meltdown due to stress around Uni work, Big M came and
hugged me saying she had missed me, I almost wanted to cry again! Knowing I
matter to these girls – especially when I can’t always do the typical things with
them – is so special, and helps me feel more like I matter. I come back to this in
review in a way, because back when I first spoke to you all about Big M I don’t
think I really understood how she would see me.
You see, I have cousins younger than me, and I often found that I was never a
‘big person’ to them, I was someone to play with on an equal level. I was in my
teens when this started to bug me when I saw my sister having opportunities
to babysit aged sixteen and I have never had that opportunity. Until M&M
came along (yes, I noticed that the day Little M was born and am disappointed
I haven’t used it as a joke yet) I had never been trusted with babies much at all.
There are still often times it upsets me that I can’t be fully trusted with the
girls, that my family hesitates to give me full control. I know part of that is due
to my disabilities in other ways – there is the risk of what might happen if I had
a hypo or that air is a trip hazard for me – but I also know it is hard for my
sister to let go of her babies into the hands of someone who might not manage
the same as other adults.
There are some things I just don’t seem to be good at, I’m not great at telling
off, Big M tends to think my attempts are funny. I’m not good at the whole
‘pick your battles’ idea, as far as I am concerned a rule is a rule no matter the
situation and my family will often tell me to let something go when I would
follow it up. I also find Big M’s reaction to being tired (usually that’s when she
will be silly or naughty) quite hard to deal with. I also want to note that most of
these apply to Big M but that doesn’t mean Little M is perfect, just that Little M
is only six months old and so she is still coming into a personality. In a few years I may have more to say about Little M than Big M, and that’s just the
nature of children.
I wanted to go into something a little bit on this post in regards to parenting
when you are the one with the disability. I won’t lie when I say I think about
this a lot off and on as I think about my future. I am twenty-three years old
now, I have about 1 and a half years left until I finish Uni and have to start
really stepping out into the world of Adult. Yesterday was also the five-year
anniversary of being with my partner, which is crazy to both of us. This means
one day in our future, hopefully, we will be talking more seriously about our
futures as parents. As part of the biological child or adoption argument we
have another component, would we be better parents to a child with
additional needs than we would be to a neurotypical child?
On one hand, I want to say yes, of course, because we have a better
understanding of the way diverse brains may work. We know social stories; we
know routine and issues with communicating needs. Would we be better in the
situation of our child melting down in a supermarket because we have done
that ourselves? Would I be better at dealing with a person staring at my child
because my Tourette’s makes me very well versed in this?
But then I think about the things I find hard. I think about when I needed my
Mum to explain things, or to advocate for me. I think about the hospital
appointments and the paperwork, so much paperwork. I worry that as parents
with Autism ourselves would having a child who is autistic keep us more under
the eye of social services, would it mean we were more likely to have our child
taken away from us?
Typical kids, that’s even harder in a lot of ways. Neither of us were the type of
teenagers to behave, well, anything like teenagers. We always did our
homework, never skipped school and why would we have wanted to go to a
loud, alcohol-fuelled party on a Saturday night – especially if we could be
watching Doctor Who instead? Every teenager finds their parents
embarrassing but would we be a lot worse because we are different. What
about if we had a neurotypical child and they grew up to feel like carers for us?
I hate the idea of bringing a child into our lives for that child then to have a
harder life.
There is so much to think about here, so much to know but part of me –
especially around M&M – thinks these decisions might not matter as much as we think they will. Big M doesn’t really understand why I am a bit different yet,
but her Dad works with a disabled young man and Big M has a different insight
because of this. When her family were on holiday, she saw a young man at the
pool and asked her Dad if it was a friend of the young man she knows. This
stranger had Down’s Syndrome. Personally, I feel that is a lovely thing to hear
an almost-three-year-old say because she recognised this person was different
but she didn’t see that as a problem.
In some ways, as much as I know it will be a hard decision whatever we choose
to do, and as much as I know parenting will also have its hard times, I think
that maybe who we are won’t matter. That having autistic parents might be
hard for a neurotypical kid but that maybe it’ll be hard for an autistic kid to
have autistic parents too. Many families out there, including mine, have an
an autistic family member who isn’t aware of their autism, and the vast majority
of autism, families are the inverted version of what ours would be – there is an
an autistic child surrounded by neurotypicals – and they get on ok.
I love my family so much, I am so lucky to have a family who cares for me the
way mine do, and, I guess, that’s the main element of a family – not what
doctor’s notes say – the main thing is understanding, respect and
unconditional love.

Thanks for reading guys, hope this was an interesting read for you all, let me know your thoughts and experiences on this, see you all soon 🙂

Caring For a Carer: The Possibilities of the Future

Hi everyone, I’m already sort of losing track of which posts I have scheduled and when I have scheduled them lol, but I am going to try and remember to place scheduled posts onto my Brain In Hand app (Pretty sure I did a post about this in the past, if not please let me know and I’ll be happy to try and do one now). I am pretty good at forgetting things, it comes with the territory of being me – in fact a few days ago I had two nights where I dreamt that I had forgotten a piece of Uni work and was going to be thrown off the course as a result, regardless of the fact this would never happen I think it’s the first time I have had a bad dream specifically about not doing work.

This post comes about after a conversation I had recently with my Mum, it was one of those days when everything I was feeling got totally on top of me and I couldn’t take it. I did something I always find very hard, I explained to my Mum (via text) how I was currently feeling in my home. Often in the past, I have felt that letters, emails, texts and face-to-face discussions with my Mum about my feelings have fallen on deaf ears. I feel she acknowledges what I am saying at the time but does not take on board some of the changes that need to happen. This time, however, I think it upset me more than I feel she was really listening.

I won’t go into detail about the discussion as such, because that would be a long story and probably infringes on the privacy of my family a little too much (given they haven’t actively given me permission to talk about them and don’t even know this blog exists) but the gist of the conversation was that I had mentioned often feeling like I am on the outside of our family, like my Mum and Dad would have the perfect family with my sister and their two grandchildren if I wasn’t around. I mentioned that often my Mum seemed to not even notice when I was telling her a story, explaining something or even just asking a question. My sister was aware of this too and for a little bit we had joked about me becoming the ‘invisible man.’

When I addressed this with my Mum however I became aware that what I had noticed, what my Dad and sister had noticed, were things my Mum herself was also becoming aware of. I suppose that is when it really hit, the reality of what we might be seeing in front of us.

Twelve years ago, just before I was diagnosed with Type One diabetes my Mum was extremely ill. She got a virus from an insect bite on holiday with gave her encephalitis – swelling of the brain. Mum was in the hospital for about three months, she had spinal fluid testing, bloods, urine samples, MRI’s CT’s, everything really. The kind of illness she had there is not a treatment, it is one of those where you just have to ride the wave and hope to come out on the shore. I don’t remember very much of this time, other than the day Mum went into hospital which is engrained as a video into my mind. Most of what I remember after her coming home is snippets, I remember she had to move very minimally, that standing was only an option to transfer between the wheeled computer chair we used and her bed. Her brain was still not right and would take a long time to go back.

Luckily after about a year, Mum was almost back to normal, there were things which never got better such as she couldn’t put her head underwater anymore, she had to give up running which had been her stress relief for a lot of years because she felt like her brain was bouncing. She has a reduced immune system and actually gets more bugs than I do, which is funny given I have two autoimmune conditions. She also really struggled if she got tired, she would get irritable, forgetful and the squint she has in her eye would become a lot worse. These were pretty much it for a long time, these were her leftovers from the illness that could easily have killed her.

When I think back, I feel like her symptoms began to worsen again not long after my Granny died, my eldest niece was only a month old and my sister had recently moved out for the first time. Losing Granny was very hard on all of us, and I actually would like to do a post about this a bit more one day, it was sudden and unexpected and my Mum was devastated.  I would say it has been since then that she has been more irritable when she is tired, that she has started to forget things and that her attention span is pretty much non-existent if she is doing two things at once.

This is where, a couple of months back, she started seemingly to be ignoring me a lot of the time. I was finding this hard as it seemed to be mostly when my sister was around, she was always able to take in what my sister and my niece were saying to her but would often not hear me ask a question. I remember one night she came in from her musical theatre class at around 9pm and I was in the middle of telling her something when she promptly told me to be quiet so she could listen to something on the tv, she then totally forgot I had been in the middle of saying something and went off to bed. In the past month I have noticed her getting angry at me or my Dad, saying we said something that we had not said, adding her own words to sentences in her head such as when I mentioned I had just taken the bread out she added ‘of the freezer’ in her head and argued with me that I had said this. When I addressed some of this with her she admitted to me that sometimes people at her work are noticing that she blanks them sometimes, and she also said she wonders if her brain injury is getting worse.

I discovered that those who have an ABI (acquired brain injury) are 24% more likely to develop dementia than other adults. I thought about my Mum’s long-term plan that after I have finished Uni she wants to go part-time at her work and work on transitioning me to living independently (something I am 100% on board for), I also thought about how this year she has mentioned a few times that technically I have a degree at the end of this year and that I can decide nearer the time if I want to do my Honours year. I never doubted I would do my Honours but I am starting to wonder if my Mum’s awareness of her slow deterioration is the reason she is mentioning this. If I were to finish Uni a year earlier then she would have more time to get me settled, to get me to a place where I am functioning almost on my own in society in case she loses the ability to help with this sooner rather than later.

I suppose I was always aware that her brain injury could mean different things in the future, I was aware that she may need support as she got older but I suppose as is often the case with these things, it is hard to imagine the reality until you are living it. I suppose, like most of us, I expected my Mum to have some old-lady issues when she reached her seventies, maybe eighties. I wasn’t really ready to think these things may start to change when she was in her fifties.

I will admit that I am trying to be somewhat optimistic at the moment – we don’t know what the future will hold – maybe if she goes to part-time working hours her deterioration may slow down a lot more, or maybe regardless of work it will stay at this level for a good while. I do worry about what will happen to me if my Mum isn’t able to help as much as she does, I worry that I won’t have the opportunities I do, I know I will not have the same type of support. I even think about things like my relationships, I want my Mum to eventually be happy to see me get married and I want her to be happy more than I want my Dad to be, her opinion somehow matters more. I think about the fact that my Dad would really struggle with knowing how to be a carer if he ever needs to be, he is not good with his feelings and I worry he wouldn’t allow himself the necessary support. I worry about how my ASD and other issues might influence my ability to be a helpful carer for my Mum if I need to be one, what if she needs me at a time when I just can’t be of any help? What if I need her when she isn’t able to say the things she wants to say?

The future is always uncertain, and our parents’ age – that is a fact as much as we also age – but I’m not sure I really understood what this could mean for my life and the lives of my whole family.  If anything, understanding my Mum is aware of the changes has given me a sense of relief that I am not the only one noticing, but I also feel it has given me a little bit more respect for her, more understanding for the number of things she goes through every day, and the number of things she has to do for me and my Dad. I worry, yes, of course, I do (I worry about everything, it’s my best talent) but I also know that I will do whatever I can to support my Mum whether these issues get worse in the next five years or the next twenty, she has dedicated much of her life to fighting for me, to help me find happiness even if that isn’t through the typical means, she is the reason I have what I do. I am lucky to have her, and I hope to make her proud to have me.

Thanks, everyone for reading again, I know that this is another sad post, sorry about that, but I have an idea for the next one which will hopefully be fun and a little lighter than the past few. I want to try and get some form of balance between good and bad lol. I have had a lot of thoughts recently for posts and I would love to know more about what you all want and enjoy so I have made this little survey, link around here somewhere, to find out more about you all and see what you enjoy about this blog, I’d really appreciate your input and it is totally anonymous. Hope to see you all again soon, 🙂

Survey

 

Juggling Too Much: When your Diagnosis Don’t Get On

SO this post, I’m sort of struggling to find the right term, but I guess what makes it different from a lot of other posts I’ve done and even more different from the ones I usually see online, and that’s because I want to talk about ALL my things (illnesses, diseases, conditions, disabilities – whatever you want to call them). You see there are loads of people out there who talk about the same things I do, I’m aware of that, but I’m also aware that there are not many people that talk about living with more than one of my conditions. If you’re lucky you might get people that talk about ASD and it’s typical comorbidities like ADHD and OCD, in rare cases maybe the comorbidities like dyspraxia and Sensory issues, but I don’t think I’ve ever read about people with ASD and type one diabetes – which is comorbid – or Diabetes and Sphincter of Oddi dysfunction (probably because almost no one has heard of it).

This post, unfortunately, comes from a place of fear. I have a routine Diabetes appointment later today and I have recently become more and more aware of strange sensations in my lower legs. I get cold feet a lot, especially at night. I’ve noticed a strange squeezing sensation just above my knee like there is a rubber band tight under the skin. Why is this a reason to be worried? It’s a worry because 60-70% of people with diabetes will end up with diabetic neuropathy of some degree. This is basically nerve damage in the extremities as a result of high blood sugar, in some cases, it has been known to become very painful, in others people become unaware of feeling in their feet. One thing for sure, it’s the major reason for diabetic people to have lower leg amputations.

You see, this was always the thing as a kid that people said to you, this was always one of the worst things that could happen to a diabetic person. In a way, a lot of people outside my immediate care (older people, doctors who weren’t in paediatrics etc.) would use this as a threat. ‘You better look after your diabetes or you’ll lose your legs’.  Now, I don’t want people worrying or me getting ahead of myself, I don’t know if this is related to neuropathy, I might be told at the clinic not to worry about it, or I might even be told it’s related to something else – I’ve been told for a long time I have a high likeliness of getting a thyroid autoimmune disorder as well as my other two since autoimmune disorders like to come in threes and it’s in my family history.

The point I guess I am trying to make, and the thing I want to talk about is that I never used to have issues with my blood sugar readings –  I was literally a bit of a model student in paediatric diabetes care and was one of the first children in my area to be given an insulin pump as a result – my problems with my bloods started when I developed my eating disorder. So in some ways, the issues that I now have with my diabetes are not the fault of me per se but are caused by my mental illness.

In connection to that, I often think that my eating disorder was partly to do with control as it usually is, partly self-medicating, and a big part of it is due to the limitations I have always had with food. You see when I was little I had a severe anaphylactic allergy to berries, then I became diabetic and all my food had to be calculated meticulously – something which is a lot easier now with a pump. It was when I was twelve they discovered I had grown out of my berry allergy, but then I was diagnosed with coeliac disease so no gluten any more. Fast forward to sixteen, I was admitted to hospital in a lot of pain and had my Gallbladder removed – this triggered Sphincter of Oddi Dysfunction.

The SOD (sphincter of Oddi dysfunction) meant that I suffered random boughts of extreme pain. This was pain so bad I couldn’t move, I couldn’t cry and all I could concentrate on was breathing, these pains could last between 2 minutes and 20 minutes and could  – and did – come on at any time in any place. I would usually come out of a pain covered in sweat, freezing cold and exhausted – usually then sleeping for the rest of the day. This pain could also leave me with another issue – sometimes I would have no appetite, or feel bad nausea for days afterwards. I will never forget for my eighteenth birthday I  was going through the nausea phase. I don’t think I even had a bit of my awesome cake (it was a handmade Disney princess castle – yeah, I am cool, honest).

So you see, when my Eating disorder started to raise its horrible head when I was around sixteen I feel that the restrictions I have always had, with the addition of the SOD did not help!

I hope you are following me, but if not you can get from this example of how my different diagnosis always overlapped and that most of them are horrible to live with as is, but they are even worse to deal with when you are also juggling the other issues. Some of the things that go together almost work together or can help to balance each other out – this is something I often feel about ADD and ASD, my hyperfocus would be a lot worse if I didn’t have my ADD to draw me to other activities. My ADD struggles with doing the reading work for Uni classes since they are often long, boring and complex, but my ASD means I hate not doing what I am expected to do so I will fight through the reading even though I know all the neurotypical people in my class won’t even have bothered trying.

One of the other examples of this which I think others can probably relate to is anxiety and ASD. My partner and I both have an issue with knowing when it is ok to miss things in order to give ourselves the space we need to breathe. Often towards the end of a Uni term, I will have a lot of things in my head, I will have work I need to do, revision to do and possibly other things. I am likely to be running on next to no sleep, and probably have a grumbling stomach and bad headache. I am also very likely to still get on the bus to do the five hour round trip for a two-hour Uni lecture. I know that it is much more beneficial for me to stay at home, to get through the work I need to do and set out a plan so I can stop myself panicking in order to do the best I can, but I also forget to consider that my disabilities, my conditions, my quirks and superpowers, that these are not like the other’s in my class and I need to allow time for myself in order to thrive as best I can.

It’s not easy balancing everything, it sucks sometimes, but all those labels I wear are part of me and they both hurt me and empower me in the very same breath. I am pretty unique in terms of related conditions, I have a spiderweb rather than a line to connect them all, and I guess that’s one of the reason’s I do share all this with everyone, because one person out there might get more from a post than most and I hope that the hypothetical person in question will always feel able to approach me if they need a friendly  ear (or eye). We are all awesome in our own ways – or should that be Au-some?

Thanks, everyone for reading, hope to speak to you all again soon, I love hearing your thought and feelings on a post, or your experiences on something I haven’t covered. Hoping to get back on a two-weekly schedule with posting now, so I hope that helps everyone a little. See you soon 🙂

 

Cimex Lectularis: The Aspie Kryptonite

So, here it comes, the post I have been dreading writing but that I hope will both be somewhat cathartic and will help to prevent this experience happening to others amongst you. This post is likely to be a long one as I am hoping to properly express my thoughts and feelings as well as the story as it stands. There may or may not be a part two, that will depend on how long it takes for this issue to be totally fixed and how much that affects me. On a more important note, those of you who may have an issue with bugs in some capacity might want to skip this post as I really don’t want to make people feel paranoid or trigger any bad responses.

So, with that warning, I am going to take you all back in time, back to around the last week of August. On one particular morning, I believe I’d been awake about an hour, I began to notice lots of little itchy red spots on my skin, and they seemed to be increasing. There were at my best count around fifteen or sixteen of them, most on my arms but some on other bits of my body too. Upon showing them to my mum she was puzzled but not too concerned after this happened again the following morning she had the horrible thought that it might be bed bugs.

We stripped my bed, took off all the duvet and pillow covers, the sheet, and saw nothing – no sign of any tiny insect life beginning to invade my life. Thank god. We were confused but they must have been something I’d been attacked by when out walking the dog – some sort of insect living in the long grass. It was a few days after this that we were due to go on holiday – which we did – for four days to Poland. I was there with my Mum and Dad as well as to of their friends who have known me all my life. For the most part I really enjoyed the trip – the lack of downtime was really difficult and I was exhausted by the time we got on the plane to come home – but it was a good trip, very busy and very insightful as I’d hoped.

We returned home on the afternoon of the 4th of August – my birthday was the following day, not a special one but a birthday none the less. My parents left me in the house just after we got back to go and get our dog from the place she had been staying and to get basic bread and milk sort of thing. I was absolutely delighted to flop down onto my bed, breathe in my me-smell and prepare to relax until the next day when we would likely see family.

That was when it changed. That was when the nightmare began. At first, I thought I saw a tiny spider on my bed, then another two on the headboard. I jumped off my bed and, pulling back the sheet off the mattress I came face to face with what looked like a flattened tick – something most dog owners are very familiar with. I managed to trap it in a little bottle, knowing that whatever it was  –  whatever all of them were – my family were going to need to see it.

Our worst nightmares had come true, they were bed bugs. The next few days, including my birthday, were a bit of a mess, I remember snippets of what happened and such but the days all blurred together a little. My Dad read online that we should use these smoke bombs on them. I also read that the smoke bombs (and most home-use pesticides for these little gits) were only effective on half the population, but my Dad is the type of person he is decided that the amazon reviews had to be right and me, the one who has studied parasites at a basic level, but still at a level higher than him, was wrong.

This began a pattern, my room had to be massively ‘de-cluttered’ I had to throw away most material items which could not be washed at 60 degrees – all the knitted things I owned basically as well as any other balls of wool waiting to be worked. I had to throw away things that I didn’t necessarily want or need, I threw away boxes and notebooks and clothes and small items that were not really of any value. I probably binned some things that I would otherwise have kept but when my Mum was holding up an item and saying ‘chuck or keep’ my brain wasn’t able to keep up and often I would let things go because I knew I had to get rid of a lot.

After the purge was completed, leaving me with at least three empty drawers in my bedroom which used to be full (and a good few others which have less in them than they used to) I then had to deal with not sleeping in my bedroom, luckily for us we have a touring caravan which stays on our property not at a storage facility so I was able to sleep in there. There were no lights and I had to keep a key for the house handy in case I needed in for anything. I also got no internet connection out there – these were relatively minor things but they added to the growing pile of things I needed to deal with.

As I wasn’t really to go into my bedroom for risk of transferring the little things all I had were the clothes I had worn on holiday and the new clothes I got for my birthday. I had my phone and my mini sketchbook which I usually keep in my bag just in case I want it. I had very little to do, had almost nowhere to get privacy and no idea how long it would take for this to end.

I was scared at first that I might lose things that could not be replaced, or things that could maybe be replaced but would cost hundreds – maybe thousands to replace them all. I have been lucky so far, I have managed to take apart my reborn dolls – something which is pretty easy to do – and check they had no signs of any insects within their bodies. I am pretty certain they are safe. I also combed through many of my collectable Charlie Bears, which are teddy bears that are not meant for children and have unbelievably beautiful fur, I used a nit comb for this and found nothing. They will need to be in the freezer for a good while to hopefully kill all the bugs and any eggs which might be on them before we can make sure they are totally safe.

I have had to say goodbye to only one thing that has really upset me so far – that is the bag I had which used to belong to my Granny. It said Knitting is Good on it, and she used to keep current projects in it. I did the same after she passed away, I was really upset to lose one of the things she had which can’t be replaced. I felt it still smelled like her house, even three years later.

Slowly things seemed to be getting a bit better, I was allowed to sit in my sister’s old bedroom through the day in order to get some privacy. I gained some wool, both that I bought and that was gifted to me by Holly from her own collection. I had my laptop back too, so I could watch some things which also helped me feel a little more in control. The week before Uni started back again I was even back to sleeping in my bedroom – but had to get dressed in the bathroom and leave my pyjamas there every day. It felt like somehow the bombs that I knew wouldn’t work, were working.

Just over a week ago I found another bite – there had been a bomb in the room only three days previous. It proved that what we had planned to do wasn’t working. Finally, it was decided that we would have to get someone in to deal with it all, again, this was something I had said a good while ago but my Dad was determined to fix it and believed it was working. I’d even allowed myself to believe it was working, but we all should have known better.

Now we are back to square one, the exterminator has made it clear that almost everything we believed was wrong. Other things have had to be removed from my room to be put in isolation for a year – this is one of the few ways to make sure any bug eggs are also dead. I also have to dress and undress in my room, any clean clothes have to be placed in black bin bags up on a shelf each night to be put on in the morning. I have to put my pyjamas in another bag when I take them off. This guy is coming tomorrow to lay bedbug traps in the whole house – they then have to be left for two weeks before being checked in a Lab. Hopefully, there will be no nomadic bugs in other rooms, no one else in the house has any bites, but we can’t be sure. After this is done then there will be a treatment on the affected rooms, and then? God knows what happens then.

So that’s what has happened up to date, that’s the in’s and out’s of the situation. As you can imagine, for me it is worse. I may be able to sit in my sister’s room during the day meaning I have been able to create some version of a sanctuary for myself, but I also am still very limited in terms of what I can spend the day doing. I have my laptop, a notebook, a sketchbook and some knitting projects. This encompasses most of what I spend my time being involved in, but not having the opportunity to work on other things is irritating. I also don’t feel like my bedroom is mine – and not just because I feel like bug bate every night when I go in to sleep – my room is totally bare – my shelves are empty, my drawers are all sitting in different places waiting to be reorganised and cleared to return to their normal place, I have none of the things I usually have sitting out for me to see and find comfort in. My bed has been placed near the middle of the room, in a very strange place. It also has no headboard so I have been frequently waking up sore since my pillows fall off when I sleep. My parents chose a new bed set for me which is similar to the one in their bedroom. The top side has a fabric close to velvet –  a feeling which makes my skin crawl. This is supposed to deter me from sitting on my bed – which used to be where I always sat. They have bought me a chair instead, which I am glad to have as I have often pointed out if I don’t sit on my bed I have nowhere else to sit. I have also found that the chair is a little painful for me because I sit in an odd position (I mentioned often to my parents over the years that sitting up straight made my back hurt but they never really looked into it – probably thinking it was an excuse)

I also don’t have a lot of comfort items, my weighted blanket is in isolation currently but my mum is hoping she will be able to freeze it so I don’t have to go too much longer without it. The bears I mentioned, my collection of Disney animation dolls and my Pop figures are all out of my room and in various places. My reborns? All but one which I put back together, are sitting in separate components of limbs, head and body. I can’t have them in my room. The one which I pieced back together is having to sit in a cupboard as my family’s lack of respect for them meant my niece took her out to play in the garden (Yes, I was very angry about this but apparently it was my fault for leaving her lying around, not their fault for not taking the doll off her)

The last bit of this that I’m going to ramble about before I leave this be, for the time being, is the changes of routine and the uncertainty. I am having to live with the fact I don’t know when I will be able to get back into my room, I don’t know if other things will need thrown out and replaced. I don’t know if I will be back there in time to get my costume for a comic event in two weeks time, nor if I will be back in there properly when my parents go on holiday in four weeks, will I be back to normal even by exams? By Christmas? I currently have no idea what to expect day-to-day, I have nowhere to go when my sister is staying here and needs her room.

Emotionally I have struggled a lot, I have been angry, upset and totally in despair. I feel like the first three days of this whole thing I was just living in a constant meltdown. I had no comfort items, I had no routine, my family were also stressed and upset and too annoyed with this issue to really see how much I was suffering – or to see that I really needed them to be gentle with me at this time.  It’s hard not to feel that they are angry at me when they mention their fears and frustration, I know they aren’t angry at me per se (or at least that Mum isn’t – Dad never says anything like that) but it’s hard for us all, they are better at dealing with it than I am, and they don’t seem to see the lows that I feel. It’s like they are wearing blinkers sometimes, especially Mum but then she’s also been dealing with things recently and doesn’t seem to notice that she takes it out on those of us who live at home with her.

We don’t know exactly where these guys came from, my Mum strongly believes they must have been in something I bought from a charity shop and I can’t see any other explanation. They are some very resistant bugs – not much is able to kill them and because they are not seen as a risk to health they are not something the council will pay for.  Supposedly they like cluttered environments and my lifetime understanding of those of us who have ASD means I am aware we seem to be either extremely clean, organised and tidy or we don’t tidy – our brains too busy to deal with any of that. So I can imagine others amongst us have ‘clutter’ even clutter which we consider valuable. Hopefully this time I am very lucky and nothing more has to be sacrificed, but that’s not a guarantee – nothing is.

So that concludes my massive explanation of some of the issues I have dealt with in the time I haven’t been writing posts. I am hoping to go back to posting regularly and I am going to try and have some posts ready in advance so I don’t have to think too much about what I’m going to write. I don’t think it really works to say I hope you enjoyed this post – it’s more of a warning to you all. These guys – bed bugs – are probably one of the worst infestations an aspie could ever have, and I really hope none of you ever have to go through over a month of stress as I have (and still am). Thanks for reading guys – I feel I have probably lost some of you since I haven’t been posting for a good bit but those who are with me, thank you. Speak to you soon 🙂

 

Wrong Place, Wrong Time

Wrong Place, Wrong Time

Quick note everyone, I am aware I have been gone for quite a while and I have been dealing with some bits and pieces of change. I actually have a few ideas that I want to write about, and I have a lot of things to tell you about which will explain my absence – part of it is due to feeling kinda low and rubbish as a result of something else, I know, mysterious, but all will hopefully be explained. I am hoping to get some posts written up again so I can programme them to upload on their own and I don’t have to think about it as such.  However, this post isn’t an explanation of where I’ve been, it’s a reflection on something from the past, and something that has been on my mind a lot recently – more than usual and I am not entirely sure why.

Firstly I want to introduce you to this girl here.

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This beautiful smiley girl here is Coorie. I believe, as do my family to an extent, that Coorie was the first real friend I ever had. Back when we first introduced a beautiful golden labrador puppy into our lives, I was around six years old, I don’t think I was properly diagnosed with Autism yet (I believe I was sort of diagnosed aged three and then as I developed that was changed to a definite diagnosis at age seven of Asperger’s syndrome) but I was an odd kid. I was that little girl in the school playground who at first glance was like the rest until you noticed how awkward her movements were, you noticed the tics she had and how she wasn’t actually playing with the other kids but was more playing beside the other kids.

It was a bit of a rough time for me, around this time I was moved to another school, a primary school where I would be nurtured the way that I needed to be, and had enough opportunities and experiences to grow into the person I am now. I know that they have a lot to do with my abilities as an adult, but I also know that the beautiful girl above had a huge amount to do with it.

In this photograph I believe Coorie is about ten years old, she passed away a few months before she turned twelve. It was a huge loss for me, and honestly, as much as some might think this disrespectful or weird, I believe I miss my dog and my Granny equally. I think about both of them as frequently as the other, and I still get upset and cry over missing them both.

I suppose though, to really explain this I need to go right back. As I feel I have talked about before on this blog (or maybe in other places  – been doing this blog for more than three years… I forget what I’ve done a bit lol), everyone believes their dog is the best ever, and that is part of how love works, but it wasn’t until I was without Coorie that I really understood how amazing she was.

I have always had dogs, when I was born we had a black lab called Robo, then we had a flat coat retriever called Sam, who was unfortunately very ill with a brain tumour and we had to say goodnight to him before he even reached two years old. I didn’t really bond with Sam because his behaviour which started off as a bit odd became worse and worse as he got older, he would often come round from a seizure and be very scared, barking and growling at us, because he didn’t remember us at that moment. My Mum, as a result, had to keep my sister and me away from him when he was in this post distal state in case we were hurt by him. It wasn’t safe and he was living a life of fear and discomfort so we had to let him go to do what was right for him.

Coorie came to us in the summer holidays, I don’t know which year, but I know it was the summer. She came from a breeder, I can’t remember where but it felt miles away for me. I can still remember what the house looked like. I remember the puppies, who had been separated from their Mum slowly over the last week to make the transition to new homes easier, were in like a large chicken coup. They had a run and an inside area when we went only Coorie and one of her brothers remained.

We debated names on the way home, thinking back and forth. My six-year-old self wanted to name her Cuddles, because already she was incredibly loving to all of us. My Dad refused, and I’m pretty sure no one else was keen on that name either, but a Scottish song I had been learning at school gave us the lightbulb moment. Coorie is the Scottish term for cuddling, you would say to someone to ‘coorie doon’ or ‘coorie in.’ It was the perfect name for her then and would only get more perfect as she aged.

I used to have a lot of meltdowns, because I could not express the problem I was experiencing, something I am now better at but to an extent and also due to a lot of strategies we would learn over the years. My Parents remember one of these explosions of anger when, as she always did even as a very young dog, Coorie had come to me to make sure I was alright and I had kicked her. Coorie yelped and cowered, looking at me very hurt and confused. That was the first and only time I ever hurt an animal, I understood instantly that this dog was on my side and always would be.

I used to be found sitting with her in her bed when I was upset, she used to lick my face or lay her head on my knee (something I now know is deep pressure therapy as well as her trying to comfort me). I used to use Coorie to explain things, either telling her why I was upset about something or using her to tell a story, giving her the emotions I was feeling. All the time Coorie was calm and collected, she was playful too but she was never rough and would always do things to make us laugh.

She was my first taste of freedom, once I got to about ten years old I started being able to take her for walks, these got longer and longer and by the time I was in high school and going through some of the worst depression and stress of my whole life, it was common that I would come home, grab the lead and take Coorie out for a long walk. She always stayed with me on these walks, she always listened to what I was saying even though she didn’t actually know what those words meant. I came back from those walks feeling sane, a bit happier and able to enjoy some things.

I came out to my dog before anyone else. I remember telling her I was gay and saying as she looked up at me ‘you don’t care, do you?’ she wagged her tail then as if she was answering me. When I became diabetic aged ten it took a while but she began to notice if I was having a low blood sugar on walks, she would come to me and walk with her body touching my leg, as if she was trying to steady me. She was never trained for this.

In fact, all the things she did she was never trained for, the way she was with me, the love she had for me and the rest of our family was immense. It says a lot that when she became very ill and my Mum had to take her to the vet we had no idea that she had a very large tumour in her stomach and a few smaller ones in other areas. She was clearly in pain, clearly very uncomfortable but only in the last few days had she started to show that. She didn’t want us to worry.  When she passed, in my mum’s arms she was wagging her tail, saying ‘it’s ok Mum.’

You see when she left our world on the 17th of February 2013,  I wasn’t just losing the best dog ever, I was losing my best friend and a supporter who rooted for me like no one else ever could.

Of course, it has now been six years since Coorie passed away, and I still miss her a lot, I often think about the things we did together, I think about her smile and her daft turns when she would run around the garden at high speed. I think about how she loved the snow and used to sniff it, getting little bits up her nose and sneezing, she used to try and catch snowballs and then look around totally confused when they didn’t hit the ground. Our current dog, mad Molly the cocker spaniel will turn five in December, she is a very different dog and I love her differences in a lot of ways but when she first came home I didn’t like her, I didn’t want to spend time with her and I often found myself thinking how much I wanted ‘my dog’ back.

I feel sad about this too at times because Molly is a lovely dog in her way and I do love her know, but when she arrived my parents thought that it was the right thing to get another dog soon because I was struggling so much to live with no dog, I had no reason to go outside and I really struggled without that love. I also thought I was ready to get another dog when we first brought Molly home, but the love that my family expected me to have for her just was not there.

I wanted a dog, but in many ways, I wasn’t ready for a puppy, for the work and the energy and the destruction that these babies bring while they are learning. It’s on my mind a lot now I think because my cousins have recently got their first dog, another cocker spaniel puppy, and I find myself a little jealous. When we got Molly I wasn’t ready, but it’s taken Molly growing up over these years to realise I am ready now, but that the time has passed for our dog. Molly has a lot of anxiety issues, she is high energy and a bit argumentative at times. She worries a lot about other dogs as she has been attacked by so many over the years, including being chased by a man on a bike with a large male Husky when she was only about five months old.

I regret that I was not ready for Molly, I regret that I did not put in the time and the training I had thought I would. I worry that me not being ready for her and not putting in the plans I had first hand, is part of why she has such anxiety and so many problems with compulsive shadow chasing. I’m annoyed that now someone else has got a puppy, someone who doesn’t have the same dog knowledge that I do, it isn’t my turn, and it won’t be my turn for a long time to come. I also worry that if in three or four years, I get my own puppy as an independent person, I may have the same bonding issues I have had with Molly.

But I know these are things I can’t change now, these things are done, and the likeliness is when I start the transition to living alone one of the things I will miss the most is Molly’s welcome when I come home, her smile and her silly behaviours, the way she ‘talks’ in howling noises as if she is telling you something and the way she makes others laugh by her happy and urgent nature.

It’s like a lot of things in life, you never know what is going to happen, you never know who is going to walk into your life and change it forever, but that change and that ability to love is what makes us special, dogs and people alike.

Thanks, everyone for giving this a read, I hope to get some more things written up soon so I can get them on a posting schedule once more. I’d also love to know, if you would consider commenting even if you don’t normally, to let me know a bit about what you enjoy in my blog, what type of things do you enjoy reading about, are there things you don’t enjoy? I can’t say these things will change hugely but it would be very cool to see what people are most enjoying. I’ll leave you with one of the pictures of me with Coorie when I was around eight, and a few of mad Molly, our spaniel 🙂

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