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They just don’t know

We can’t blame people who don’t know…

Those who have no experience of autism, who don’t have it themselves, don’t work with autistic individuals, don’t have a family member who is autistic are ignorant of the difficulties faced by those on the spectrum. This isn’t there fault, there are many things I am ignorant of I will freely admit that but it’s simply a case of never coming into contact with the subject or never having a need to find out more about it that is the cause. We seem to be expecting the world to go and find out about autism and educate themselves, something they are simply not going to do for themselves without a reason. Therefore, it is our job as autistic people, there parents and carers and people who work with autistic individuals to make sure that information about autism is everywhere if we want people to understand WE need to make that happen. We need to make sure that it is unavoidable for people find out about autism. This way we will reduce ignorance and increase understanding and empathy among the general population. Use social media, talk to people, don’t be afraid to say my child is autistic, I AM AUTISTIC! Tell people what it means, how it affects you or your child or someone you know. It is certainly nothing to be ashamed of and in order for autistic people to live happy healthy long lives changes need to happen and these will only come about if everyone who cares enough makes a noise about it. Lets make autism just another kind of ‘normal’. I know it sounds over ambitious but we need to create a society where everyone feels like they fit in and belong, where there are places that feel comfortable for those who are over whelmed easily, where no one stares at those who flap due to excitement, where there are schools that can actually cater for the varying needs of the autistic child etc etc etc. It seems wrong that we need to fight for this to happen but the truth is that we do. If we want anything to happen, we are going to have to fight and struggle to get there. But if we come together and show we aren’t afraid or ashamed to make that happen it might just… I know it wont be easy but it would be amazing don’t you think?

Happy New Year!

New Year’s Resolutions…

My first attempt at a blog post for 2019! Happy new year everyone, I hope you and your families have all had an enjoyable festive period.

In the past new year has always been a time where I put demands on myself to sort out various aspects of my life such as eating healthier, trying a ne hobby (as I realise I don’t have any), promising to stay in touch with friends more often etc. I then, like many people, get to the end of that year and realise that after about January the 10th I already stopped putting the effort into doing these things. Except for last year I promised myself that I would try and get the kids out and about as much as we could and do more things together, this I think we succeeded at. We went away 5 times during the year and had various outings in between. Most of which I managed on my own with all 4 kids, challenging at times but honestly the best times of the year by far.

This year I have decided not to put pressure on myself to meet specific targets. I want to ensure that we have things to look forward to as a family and that I have things to look forward to myself. I have realised that as long we are working in the right of our goals then it doesn’t matter how fast or slow we make progress towards them. Small steps or slow progress is much better than expecting too much and then feeling like you have failed at something. I am the kind of person who, when I decide I want something, I want it now. Even if it’s something like a skill that takes a long time to master, I get frustrated with myself that I am not as good as I want to be at it faster.

So, I suppose by saying I’m not going to make a new year’s resolution this year and give myself a break I AM actually making one. Oops!

The Trouble With School

The Trouble With School

School is the one place outside of the family home(s) we would expect our child to be cared for and listened to the same standard that we would give them. Of course, we want our children to achieve the best they can at school but above all else we want them to be happy and enjoy their time there. As we know this is not always the case, not all children enjoy school and not all children achieve their potential because of this. As parents we may then feel guilty for sending our child to a place, an environment they are not happy in, I know I have had those feelings. Why am I being forcing to put my child through this every day?

As we all probably know already the reasons a lot of our autistic children are struggling at school are around a lack of understanding. Understanding of teachers, support staff, lunchtime supervisors, senior leadership and other children. Though some school staff have autism training there far more that do not. Even the staff that have some level of training it is likely to be out of date or very minimal in content. This needs to improve drastically! Also, my personal opinion is that it should be delivered by autistic people themselves or their parents or at least be planned and resourced by them. I believe it is impossible for a group of people who have no personal experience of autism to truly understand it enough to train other people about it. Training should be absolutely compulsory for all school staff with at least one specialist in each school (depending on the number of children in their school with/ or suspected to have an ASC). I don’t know if you agree? But that’s my personal view on it.

My son was regularly told to stop twiddling with hair and put it in the bin until he Dr. said in a letter to school that he needed to fiddle with something to help aid his concentration. My older son was excluded from primary school three times for lashing out at staff but this only happened when he was at crisis point/having a meltdown and staff tried to approach him. He even left school one day in the morning just after arriving in the classroom. The poor teacher couldn’t leave the rest of the class so by the time he’d called in a teaching assistant to take over he’d no idea where he’d gone. No one stopped or questioned where he was going or why he wasn’t in class. They continued to search the school knowing that the gates were still open for parents to leave. My husband and I were going into town and our son jumped onto the bus behind us looking quite upset! We were very lucky he had seen us heading to the bus stop or there wouldn’t have been anyone in at home when he got there. The school didn’t call me, I called them about 45 minutes after he had left the school. The headteacher blamed my son for leaving the school as he should no better at his age and wasn’t going to take any responsibility at all. These are all examples where there is a complete lack of understanding.

It’s not only a lack of understanding around behaviours but also around the ways which autistic children learn. When I was at school I was labeled at shy and lacking in confidence and the answer was to force me into situations I was uncomfortable to increase that confidence through exposure. Like making someone who is afraid of spiders hold a tarantula. The truth is (with hindsight) that is wasn’t a lack of confidence but it was a lack of social skills, I did not know how to ‘be’ around people or what I should say to them. Those skills that people are supposed to pick up naturally many autistic people just – don’t. Forcing an autistic child who struggles with social anxieties or a lack of these skills that most naturally acquire into a situation such as a group discussion or giving a presentation, things we all had to endure at school, ISN’T GOING TO WORK! But schools continue to do it to ‘increase their confidence’. In fact, all it does is make the autistic child feel inadequate as they feel they are incapable of doing things that the other kids can. It high lights to them that there is a weakness there and doesn’t boost their confidence at all. Another huge lack of understanding.

I believe forcing an autistic child into doing anything that makes them feel uncomfortable is a very bad idea. It will have detrimental effects on their mental health. But schools continue to do it.

My older son, now at secondary school in an IR, is very bright and academically able but his report shows his levels are way behind what they should be based on his Y6 SATs results. This is mainly because he doesn’t always attend lessons. The reasons he doesn’t attend are quite often because the teacher shouts a lot or speaks too loudly, there is a lot of disruptive children in the class, he’s asked to work with people he doesn’t know, he doesn’t understand the learning and feel uncomfortable asking for help…. Many things, but all of which are things that could be changed. I have been on the verge of removing him from school and home schooling him lately. We talked about it a little and we agreed to see how things are at the end of Y8 and if he’s making more progress. I feared this would happen, he’s losing his academic ability because of being in an environment that doesn’t fit well with his needs as an autistic person. But what is the alternative? He’s too able to attend a special school and there’s nothing else. There should be a place in school for every child tat suits their needs and where they can show off what they are good at instead of them all being placed in the same box and all expected to come out the same.

I’d love to hear your thoughts.

Comparing Traits

Comparing Traits

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.

Traits 1 2 3 4
Sensory issues none Heat, bright lights, loud noises noises and clothes (only wears pants at home) Certain materials he doesn’t like to touch
Has friends? 1 and a few she knows but isn’t close with 1 2 No – mainly age related
Talks to strangers struggles Vary rarely Yes if calm Takes a long time to come round.
Emotional regulation 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
empathy minimal Some issues none None but age appropriate
Meltdowns no Yes – some leading to school exclusion Very on edge emotionally, at home but not at school Yes but at his age difficult to distinguish
Food issues Eats the same foods every day Dry foods only, same foods every day Very restrictive diet Not too bad
Learning issues Far from it Very able Delayed speech and behind at school No seems bright and vocal so far
Avoids tasks Yes but will do if asked Usually and not very persuadable always no
Mental health issues

 

 

 

Sleep

Bad anxiety

 

 

 

Too much

No

 

 

 

good

Anger issues (also diagnosed with ADHD)

 

 

Poor

Signs of OCD

 

 

 

good

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!

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.

What even are emotions?

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!

I’ve no idea who I am…

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.

Anxiety

Anxiety

I am writing this blog post to reach out to people who are affected by anxiety. If you suffer yourself perhaps you will read things here that you can relate to and feel a little less alone. Or maybe someone close to you suffers from anxiety and it will give you an insight into what is going on for them and help you to support them better. Or maybe you’re just interested in my thought and experiences on the topic. Why ever you are reading this thank you very much for doing so and I would love to hear about your thoughts and experiences too.

A bit about anxiety

Here’s a brief description of that I understand anxiety to be, I’m sure you will know most of this already.

It is a misconception that anxiety is only a problem in the mind, it is also something that affects the whole body. It is a natural response to danger, we’ve all heard of ‘fight or flight’ right? It is a necessary part of life and in some cases it actually helps us. You’re nervous about going to a job interview so you take extra time to make sure you are prepared, this is helpful. When being anxious becomes a problem is when it is so overwhelming you cannot get on with your day to day life without it getting in the way. In this case we are usually worrying about something simple like missing the bus but our bodies go into ‘fight or flight’ mode even though we aren’t in any actual danger. Quite often the worries we have that cause us anxiety are not ‘real’ but are hypothetical. This means we are worrying about things that ‘might’ happen not things that already have. If we take a step back and think about these ‘mights’ and ‘what ifs’ we will often find they didn’t happen and were actually never likely to. However if you are in a cycle of worry and anxiety these things are huge and you look at them with negative eyes and almost convince yourself bad things will happen.

How anxiety affects me

The ways in which anxiety affects people vary greatly. For me my main issues are stomach problems usually pain, bloating, diarrhoea, spasms and nausea. I also have dizziness, everything looks really bright (dilated pupils) and an awful feeling which and I can only describe as feeling hopeless and unable to control my thoughts and a desperate wanting to escape. Generally, stomach issues are the main problem the other symptoms are in more extreme cases.

What makes me anxious?

I have health anxiety – I think there’s something wrong with me which leads me to worry about dying and not being there for my children.

I worry about anxiety – I worry it will never go away and it will plague me forever. (Crazy I know!)

I have social anxiety – I find talking to people quite hard at times and worry I won’t have anything to say. I am not too bad if it’s just one person but find it very hard to join in a group conversation.

Fear of fainting – I have fainted in the past several times for various reasons. This has happened more than once on a bus. Now every time I go on public transport I worry I will faint.

I worry about my children – Every parent worries about their children that is normal. However last week I felt ill putting my children on a fair ground ride because I was worried they wouldn’t like it!

Other things – Crowds, noisy places, embarrassing myself in public, getting lost… I’m sure the list goes on but I’m getting anxious thinking about it!

Irrational thoughts – some days it just gets out of hand!

“What if I get to the front of the queue and somehow I’ve lost the power of speech?”

“What if I get run over and get amnesia and forget who I am?”

“What if the ceiling falls in on my son who’s sat there playing Playstation?”

“What if a lion jumps out of the bushes and eats me and my dog while we’re walking in the park?”

Ridiculous! But how do you stop an overactive mind?

Coping Strategies

So what do I do about it? To be honest until recently I just put up with it. I’d have phases where it wouldn’t be so bad and phases where it would be bloody awful. Only now after about 18 years of suffering am I beginning to see it might not always have to be this way.

Remember different strategies will work for different people.

In the short term trying to keep busy doing something to distract my mind from worrying definitely helps, however if we don’t deal with the worries themselves they will always come back. I would always recommend going to your GP for their advice, they are the professionals. In my case my GP referred me to a program called SilverCloud which is an online course based on CBT. It is very informative and has lots of great tips and also includes real life stories of people who have succeeded using the techniques it teaches. Perhaps the most helpful thing I’ve found so far is something called the worry tree. In short this makes us look at each worry we have. What is the worry? Then consider if it’s ‘real’ or ‘hypothetical’. If it’s hypothetical we can let it go. (I think this might take some practice!) If the worry is real then we need to come up with as many solutions as we can (no matter how ridiculous). We can select the most appropriate solution and begin to, or plan to, act upon it. For me just starting to try and solve a problem or having a plan to solve it will make me feel better about it.

I have also signed up to the app HeadSpace which was recommended to me by my GP. You can get access to some of the features for free and there is a paid subscription which obviously includes a lot more. Now Headspace is a meditation app. I thought the same when I first heard about it, meditation is stuff for monks and hippy’s and there’s nothing scientific or medical about it. But surprisingly it actually works! It really helps me calm my mind and the best thing it’s taught me is about ‘staying in the present’. Rather than dwelling on the past or worrying about the future and focusing on right now.

Finally…

Another, and perhaps the best, coping strategy is talking to those around you about how you feel Please don’t be ashamed to admit you’re not OK. The people around you who care about you will want to support you. This brings me to another reason for writing this post. I am guilty of not talking to those around me enough either and hiding away the fact I have a problem with anxiety. So I hope this post starts a conversation if you are suffering. Either by commenting on this post and talking to others who are in the same place as you or by encouraging you to go and talk to your GP, family member or friend. Please talk.