Friday, 28 August 2015

Not Everyone's Brain is Wired the Same

My name is Grace and I have a hidden disability. 

People's ignorance rarely bothers me me, but it never fails to do so when it comes to hidden disabilities. The past year or so has really disappointed me as I've seen how there is still a huge lack of empathy and understanding and sometimes just pure disrespect for hidden disabilities. Common misconceptions include

“But she looks normal”       “She can help it though”        “You wouldn’t know when you look at him”      “It’s not a real disability though”     “It’s not an excuse for his behaviour”     “It can’t affect her that much”    “It isn't serious or anything though so it’s okay”   “Can’t she just try a bit harder ?”   “That’s just laziness”   “That’s only another excuse” 

Not all disabilities are visible and that doesn't make them any less real. 

So let's begin again. 

Hello ! My name is Grace, I am sixteen years old and Dyspraxia and Sensory Processing Disorder give me hell on a daily basis. Dyspraxia - or Developmental Coordination Disorder - affects one in thirty people and is why I am extremely disorganised and cannot ride a bike. Sensory Processing Disorder affects people with Asperger's, Autism and ADHD but also people who do not have an ASD. This is why I find social situations stressful and feel sick when wearing a pair of jeans. As I've progressed into my teenage years, Sensory Processing Disorder - let’s shorten it to SPD - affects me way more than Dyspraxia.

Today I'm focusing on how a hidden disorder like SPD can affect someone like me socially. I'm really hoping that anyone who reads this post can learn something from it - whether that is the characteristics of someone with sensory issues, how to be there for a friend with sensory issues or if you have any of these difficulties yourself and don't know how to explain to friends ! This is going to an extremely long post, but I am going to break up the different sections with pictures.

My therapist asked me the other day about how I feel having that 'label' (i.e SPD and Dyspraxia) and I said that I didn't mind as long as it didn't define me, because it is part of me but not all of me. As long as a teacher at school just keeps my difficulties in mind when it comes to homework and tests without giving me too many allowances, and my peers remember that I don't have the same level of social skills as them without them treating me too nice all of a sudden, just no. So as long as that doesn't happen we're all good. Besides, I'd rather have a label of dyspraxic or the girl with sensory issues than a label of bitch, weirdo, retard, lazel, spaz, slow or freak.

My nervous level is never at zero, it is always building up. When something occurs that makes a person without SPD feel anxious or upset, their nerves may go up to two but by the time another unpleasant event takes place, it will be back down at zero. But someone with SPD is never at zero so my nerves keep going up and up until I have what I like to refer to as a meltdown - the proper term for it though is a sensory overload and it could be likened to a child's tantrum on a larger scale. I scream and shout repeatedly, uncontrollably crying and I'm locked in a state of mind that I cannot find a way out of. I always feel awful afterwards since no matter how scary it is for me, it's even scarier for my family to watch as I am unpredictable and can never remember what happened.

It also doesn't help when you're in your adolescent years and your hormones are going ape anyway ! Something said to me the other day - again, by my therapist - was that it can be very frustrating when your body doesn't work the way it's supposed to. And that is my whole fury and annoyance with all my issues described in a sentence.

With SPD you either stand too close to someone or you flinch when they stand near you. You either eat nothing but one particular food - for example bread - or you were obsessed with bread a week ago, and now you cannot stand it. You either find pleasure in taking risks or you fear and avoid anything uncertain. You either come across as acting too enthusiastic and fake or withdrawn and rude. There's only ever been black or white, grey is nonexistent. I really want to focus on how much things like SPD can affect a person, socially. As an adolescent all you want is to be understood and accepted by peers and that can be so difficult. It's not just that we're 'socially awkward', we genuinely do not understand how to behave around others, how to engage in conversation, what is acceptable and what is not. I really want to focus on explaining how someone with SPD can be affected socially.  Every person with SPD is different, no two are the same but similar to how I described the grey earlier, there are two very different ways that a person with SPD can behave and there is no between. 

Some on the hypo-sensitive side of things have no limits since they simply have no understanding of them and are not aware of or sensitive to their surrounding. They can crave touch so they may stand too close to a person or feel the need to constantly be touching something, anything ! They can also talk for what feel likes years without realising that others may want to give their own input into the conversation and they are often considered a natural leader but also quite 'controlling'. They can enjoy being the centre of attention and wish to have control over everyone around them. The trait of impulsiveness shines through as their words and actions can be unpredictable and result in inappropriateness and argument provoking. Lashing out - whether verbally or physically - isn't rare which gives some a bad name with their peers. 

Some are on the hyper-sensitive side. They back away from any form of touch such as hugs - even from family. They usually find crowds and large groups quite stressful, especially when company act loud and boisterous which can end in them keeping their distance from the centre of events and preferring to observe. They really don't know how to handle social situations, so panic attacks and meltdowns before, during or after these kind of occasions are common. Social anxiety is kind of the free gift you really don't want added on to your original gift of SPD. This can cause them to have meltdowns, panic attacks and/or outbursts of anger either before, during or after social occasions.  They can sometimes be considered rude and unfriendly for their withdrawnness, especially when they sit in silence because of the difficulty of making conversation and how quickly they run out of things to say.

I'm on the hypersensitive end of things, so I'll talk more about that end from my personal experiences. For example, at the beginning of 2015 I really threw myself into talking to people more and going out, whether it was to the school's Strictly show or to the beach. As much as I got to know loads of amazing people and tried new things, it was a bad idea to force myself so much out of my comfort zone. Before I'd go out my anxiety would take shape in form of thinking I looked fat, my face was huge, my legs were too chubby so I'd have an entire panic attack and have to redo my makeup and change outfits. When I'd be there I couldn't handle large groups or negative scenarios so I'd either act like a complete bitch and then end up having to run off to have a meltdown. I also eat a lot in social situations to distract myself and in the past I have self-harmed. Then when I'd get home I'd overthink everything I did and question whether people liked me and then I would cry myself to sleep. Since then my summer has been hell and like I mentioned at the beginning, the thoughts of messaging people on Facebook or going into town makes me really upset, nervous and angry and I'm in constant physical and mental pain. I am pretty sure people on the hyposensitve end also experience these kind of things, except it can be even worse for them since they are more inclined to be loud, unpredictable and offensive and people are even less understanding and the person with the sensory issues just can't understand what they have done wrong.

But whilst the two ends of the scale differentiate, we still all share a lot in common. Eye contact is a foreign language - like how do you do it without being creepy - and so is sarcasm, which is ironic for me since I confuse most non-SPD people with my sarcastic wit. We sometimes find ourselves in awkward situations over not understanding the difference between a joke and an insult, a weakness that can be taken advantage of. We can also be quick to judge others, and in return a lot of people can be very quick to judge us anyway ! People with SPD  are very impulsive which is why we often are too honest, don't think through our next move and blurt out the wrong thing. We also are more inclined to go along with everyone else's opinions of people and behaviour if we think that it will automatically make us more well liked and blended in. We have no filter so it really is no surprise when one begins speaking of the ins and outs of childbirth during lunchtime when everyone is devouring their chicken rolls. Mix that with how we never know how to deal with bad news, important questions or drama and you can see why we often have to seek help from others with responding to these kind of scenarios. Our lack of social awareness and skills can make us seem very naive so we're easy to fool and to make fun of without us even realising it. People with SPD also form obsessions so one may bore everyone to death by speaking for long periods of time of only one topic that fascinates them.

Personally, I have realised a lot lately that I feel very withdrawn from people. As if I can't feel close to them like others can. I don't feel as deep a connection with family as I should. I am forever completely unaware of my friendship or closeness to others. Which is why I avoid a lot of contact with people as I'm overly conscious of my ability to be all over people like a rash. I find it difficult to relate to people and up until this year, I felt what I would describe as detatched. I suppose I won't know until I'm older whether this is part of having sensory issues or part of being sixteen. A lot of people have worse issues than me and can find it difficult to feel empathy for others or recognise emotions, such as when someone feels sad or wants someone to talk to and again are unaware of how people see them.

The thing is that all these characteristics are visible and everyone sees them. I know this because too often people make it their business to point them out and make sure everyone else sees how different all these traits are. But the reason for this behaviour is not visible and people have a problem understanding and accepting this. And I've met a lot of people who understand these difficulties and try their best to show empathy and be there for that person. I've met a lot who have still never heard of SPD, yet they still make an effort to treat those like everyone else. But I've also met a lot of people who are naive to the fact that there is a reason why some act this way. I've met a lot who are fully aware of these issues and who suffer, yet they only choose to understand when it suits their own needs. 

I do appreciate how difficult it is to understand. Up until a year ago I found it so difficult to understand and make allowances for the behaviour of those who are hypo-sensitive so I can't imagine how frustrating it must initially be for someone who doesn't have any issues similar to SPD. Some days I feel like nobody ever understands and I don't want anyone to. But I still become very angered by the lack of empathy and understanding. You wouldn't dare become aware of a hidden disability, such as deafness, and then still whine about how the kid is being so rude by not listening to you. So why do so many people continue to dismiss the diagnosis of people with Asperger's, Autism, SPD and ADD. 

We don't look for pity, excessive allowances for our behaviour or to be treated differently from anyone else. All we ask for is for ourselves - along with our quirks - to be accepted and understood. You may ask why I emphasise so much on being understood and what will change if we're understood more ? Well, understanding doesn't wipe away our problems but it makes life a heck of a lot easier for both ourselves and those around us. It can also put your mind at ease that you are not hurting this person in anyway and that they have one more acquaintance rather than one more enemy. Without acceptance, understanding and tolerance, people are more likely to be bullied because of their issues.

If you do have sensory issues it is definitely important to let the people who you are constantly around know. It is so so much easier for you and that person, it can make things a lot easier and more comfortable and it is just beneficial for both parties in the long run, plus you will will both learn a few things from each other. I am crap at explaining things or putting the correct words into sentences so sometimes, when becoming close to a new friend or group of friends or when you have a new teacher or boss, the easiest thing to do is to print out a list of the 'characteristics', write them a letter or give them a link to a website where they can find out more information. For people I don't know so well or less close family members, I just explain everything briefly and only really bring it up unless the topic arises in conversation. There is absolutely nothing wrong with having any kind of disorder or disability and you should never feel too embarrassed of it to tell someone. If somebody reacts negatively to finding out about your difficulties, it's their problem that they cannot be supportive, not yours.

 Also, when you are having difficulties understanding sarcasm or a slang term in a conversation, there is nothing wrong with politely asking anyone else in the conversation about it ! Again, you shouldn't feel embarrassed about having a lack of social skills or not wanting to participate in a conversation. If you need help with understanding how to act in certain situations, how to understand sarcasm, body language and so on, don't feel afraid to ask a family member or friend to help you brush up on your social skills. Something that's advised for people with Asperger's and Autism who don't have a great grasp of understanding people's emotions, etc. is watching comedy ! And it seriously is the best way ever to improve your social skills.  I put my improvement of social skills down to watching so much comedy over the years. I've also heard that Laurel and Hardy is supposed to be brilliant for starting off with understanding other people. Back on topic, if there's a day when you don't want to talk to anyone and just want to be alone, all you have to do is politely tell someone exactly that and it's up to them to understand. Finally, it's frustrating when you basically say everything that comes to your mind, how you may have upset someone or when you cannot remember what you said during a meltdown. But it's always important to ask 'have I done something that upset you', learn from your mistakes and apologise.

If you are wondering how to behave around or treat someone with sensory issues who doesn't have great social skills, it is not complicated at all, I promise ! Just be as friendly as you are to anyone else, don't treat them any better or worse than you would treat someone without those difficulties. Let conversation flow as usual, treat them like a normal person ! Although a lot of us can have a lack of social skills and can be quite shy, that doesn't mean we don't like interacting with other people - I love chatting to people, for pete's sake ! It just means that we mightn't enjoy chatting for as long as others do and we may not be able to carry on a conversation for too long either. And although some of us can act extremely enthusiastic or loudly without thought, we don't mean to act as if we're on some drug or freak you out !

If you have a friend or relative with sensory issues,  I think the most important thing you can do is understand and let them know that you are there for them.  As a friend, you're not supposed to be responsible for or in charge of them, but it is important to look out for them. There will be a lot of times where they may reject invites to a day out, a sleepover or a party, but it can be nice to still let them know when there are social occasions occurring and encourage them to come along - although I'd advise not confusing encouraging with forcing. Same goes for family, if your sibling, child or relative doesn't enjoy going out the whole time or attending occasions - particularly large family events - please give them the choice of whether to go or not, when possible. Nobody likes to be forced to do something they're uncomfortable with and when it comes to someone with sensory issues, you are welcoming an outburst.

 If your friend or relative gets quite anxious in social situations and finds it hard to carry conversations, being a person who can sometimes act as a 'wingman', as in getting them out of drawn out conversations or uncomfortable situations, can be extremely helpful. If they appear to look increasingly upset, frustrated or nervous, ask them if they are okay and whether they would like to find some air, take a trip to the bathroom or go for a walk somewhere quieter. As cliche as it sounds, having a code action or word for 'I need to get out of here' or 'are you okay' could be helpful too. I find it extremely difficult to cope with pressurising demands, drama and uncomfortable or confrontational conversations - especially when online. A lot of the time my mam helps me with responding in stressful online interaction and when I don't want to ask my mam, I have a friend who is so so helpful when it comes to crisises. As I always say 'you have more experience than me in this. Well everyone does actually' ! Side note for people with sensory issues : if you need help with responding to a message that you don't know how to deal with, please ask for help ! My worst decisions have been made when I tried to deal with an uncomfortable or pressuring situation online.

When it comes to having a friend or relative with these kind of issues, communication and understanding from both sides is vital. You also need to let them know what you are or are not comfortable with, since people with sensory issues are often unaware of when they've crossed the line when it comes to comfort zones, inappropriate jokes, hurting someone's feelings, loudness, secrets and personal space. During a meltdown we can often say things that we don't even remember saying and I also feel that it is extremely important to take someone aside and politely recite what they have said and how or why it may have hurt your's or/and someone else's feelings. Remember not to do in front of others and large crowds. Having a friend or family relative with any of these difficulties can be frustrating, difficult and sometimes a bit of a challenge. I can assure you though that that person will always be forever grateful for your friendship, understanding, patience and any second chances that you have ever given them.

When anyone, but especially someone with these difficulties, feels understood and accepted it can turn their life around. Rather than becoming completely uninterested in and fearful of school, being unable to concentrate in classes, avoiding social interaction and becoming introverted and often depressed, a person can attend school with a peaceful mind, there is more space in their mind to concentrate, they can work on their social skills and find it easier to confide in people. For an action that doesn't cost a penny, so much change can come out of acceptance and understanding. It is always worthwhile to remember the saying “you never know what goes on behind closed doors” and to remember that all human beings have 3D personalities that are complex and not flat. What you see is not always what you get !

I really hope that you learned at least a thing or two from this post and it might change your views on the way hidden disabilities/disorders can affect people. If you have any questions about the topics discussed in this post, feel free to comment on this post, tweet me or send me an email !

Thank you mam for proofreading this post and always understanding and thank you for reading this post !

Grace x


  1. This is such an extremely interesting post, Grace, and I think it's extremely brave of you to open up about it while also creating awareness! Personally, I've never heard of SPD and after reading this I definitely feel like I understand it. You have great tips on how to be supportive also, such a great post! xx

    1. Thank you so so much <3 really glad to hear, I appreciate it !

  2. Excellent post Grace and something I would love to see in print so more people could be aware of this. I am very very proud of you.

    1. Thanks so so much Alma <3 means a lot !

  3. Well done Grace! Your post was so well written. I love the way you explained everything and told your story. I had never understood what SPD is and now I do.

    1. Thank you so much Roisin <3 glad to hear !

  4. I loved reading this and it was very well written! You are very brave to go through such a thing, glad you want to make awareness of it x


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