This week I started a brand-new seminar called “Talking to your child about ASD” for parents of children on the autistic spectrum and it got me to thinking back to my diagnosis and how it came about.

As a side note:  I must be going mad as I’ve booked in to follow this up with a new course piloting in the summer for young people aged 10 to 14 who have recently received their diagnosis. Supporting them to understand their diagnosis from a positive perspective. I say I must be going mad as whilst I miss working face to face with young people and will enjoy that element of the training, I think I’ve set myself and my business partner up for a very difficult task with this one.

I’m up for the challenge though as I have been seeing more and more in my work that a diagnosis later in the teen years or for some into adulthood can often have devastating consequences. My view on this is that often reaching those teen years without an understanding of your difficulties because you haven’t had a diagnosis, but knowing you’re perhaps not coping the same as everyone else, leads many teens to having a lot of negativity around their self-identity, not from their families necessary but from other adults. Being told you are “Bad” or “Naughty” in school or in the community because you are distressed, but people not understanding the reasons why and you don’t have a name for it. This can then lead to something we see all too often where they then get the diagnosis, sometimes at the same time as their parents, then automatically they relate the word autism to all those memories of being told or hearing others say negative things about them. Had I got a diagnosis in my teens or even into my twenties I know I probably would have felt the same and made that same connection.

So, putting my big girls pants on again I’m hoping to make a change here and this pilot is the first step.

Back to me LOL! I often tell people having my diagnosis of autism and Sensory Processing Disorder is the best thing that ever happened to me. I was as many know diagnosed at the age of 40 😊 This wasn’t an easy journey for me though as there’s lots of barriers to cross when you’re an adult seeking a diagnosis, not least getting past the GP. Although for some this can be the best route, in my case it wasn’t, in fact after plucking up the courage to go to the GP she just succeeded in making me feel even more useless than I already did. Comments like “Everyone nowadays thinks they are on the spectrum,” “You’re an adult, what good would a label do now” and “I really don’t think you do as I can see you can make conversation and have eye contact” Sadly this is not an uncommon response to adults who visit their GP’s. Let’s take a moment to appreciate that GP’s wouldn’t be the ones assessing for autism anyway, its not their skill base so what makes them think they can diagnose it in the surgery before proper assessment I’ll never know. I hope this trend changes as it damaging to so many adults who like I say haven’t made that appointment lightly. Often, we will research the hell out of autism, speak with friends and family, put together a list of how we fit within the triad of impairments and then practice and ruminate at length what we are going to say. Only to be “shot down in flames” ( oops there goes another idiom!) I know by time I got to the doctor’s appointment I hadn’t slept for the previous three nights worrying and had in lots of ways lost the ability to talk and ask questions about the situation I found myself in.

So, for me even though local authorities have a responsibility to ensure they have adult diagnostic pathways and I’m sure many do, where I live and with my doctor it became impossible. Time to switch track.

I haven’t always thought I’ve got autism, in fact I’ve tended to think like everyone was drilling into me that I am just a malfunctioning human being, a drama queen who attention seeks constantly through difficult behaviour and doesn’t understand the world like everyone else and this was because I have had mental health issues. Certainly, following a significant mental health breakdown between the ages of 16-19yrs, the ripples of which lasted for many years after, myself and others could be forgiven for thinking this was the case. It didn’t make sense to me though as although I do suffer from major social anxiety and as I said lots of sensory processing difficulties I’m also a very happy and driven person and people often tell me I’m also a very positive person. 😊

So, how did it come about…

Following a run of seminars, I was delivering where I’d been working with the same families for the past seven weeks, a parent approached me several times throughout the course to tell me she thought I had autism……. very rude I remember thinking at the time, she obviously isn’t listening to my descriptions of autism, particularly any discussion around females and autism. OR maybe she was….

The end of the course she took the time to tell me again and I went home that night to tell Mark. “But we’ve always known that, haven’t we,” was Marks reply. 😊 Wow! thanks for telling me.
I guess some things go unsaid between couples sometimes and I’m not very good at “reading between the lines” or understanding unspoken language more to the point.

Anyway, that’s history and what followed was as I say the most difficult few months while I desperately tried to get my head around it and build up the courage to broach the subject with the GP.

I know I’m lucky because working for the National Autistic Society at the time and having approached my manager, who remains a great friend to this day, I was able to go private and attend the Lorna Wing Centre, in London, where Dr Judith Gould carried out my assessment. I’ll be forever grateful for this opportunity and for the support my friend gave me as I truly believe if anybody else had carried out the assessment I wouldn’t have believed them, mainly because when you’re a parent of a child with autism you do wonder whether it your lifestyle that’s making you seem more autistic. As one of the leading professionals pioneering the way for female diagnosis she knows what’s she talking about and following a lengthy dissection of my life to that date she eventually told me I am autistic.

Coming to terms with this happened quite quickly for me and my personal super hero Mark (link to previous blog) However, the process of telling others has been very difficult, in fact it took me a couple of years to explain to my mum and dad and there are other family members who I’ve never had that discussion with and never will. Its just too difficult and I know I need to protect myself from that conversation of “But, you don’t look autistic” or “oh yeah we are all on the autism spectrum eh” or “You can’t be, you have a job and friends” and the old eye contact comparisons.

As a side note… Like many people with autism and indeed people in general I find eye contact to be incredibly painful but being an autistic female who feels a pressure to fit in and obey the social rules I will mask the heck out of eye contact. What’s really going on when I’m looking at people though is an internal dialogue of “OMG this isn’t comfortable, can I look away now, oh no, I’ve looked away too long I better look back, ahhhh! I hate this” ☹ Then by time we’ve finished with the social niceties I find I haven’t heard a word the person has said. I didn’t hear any questions within that conversation, too anxious about eye contact to hear. It is as with most things though easier with people I know and trust as safe people to speak to.

I wish more people could have the positive experience I ended up having but sadly that’s not the case. Only this week I heard about another couple of amazing ladies and a dad who having plucked up the courage to go to their GP were told the same as me, one lady had got as far as appointments for assessment and was still told you just have anxiety and a label won’t help. Eh! Hello yes anxiety caused by living with autism said the lady and quite rightly. I feel this must stop and at the very least some acknowledgment that just because as a professional you don’t understand the difference “a label” will make to someone’s life doesn’t mean it won’t. It certainly supported me to go back through all those difficult years and make sense of everything I’ve experienced, some of it not nice at all and then to start to be kinder to myself and not least to put in place better coping strategies.

By the way it is anything but a label, that to me is a person without autism trying to rationalise the need for something which they can never quite understand, I see it as being a signpost, a signpost to seeking the type of support, understanding and respect you need and deserve and very much a way of starting that journey of being kind to yourself, understanding why you have had a difficult time perhaps, growing up and understanding the world around you as best you can. How can that be anything but super important?

I think for my next blog I’m going to write about social masking as its an area that a lot of people appreciate happens but maybe not understand the complexities of it. But for now, I’ll leave you with some links to additional support regarding telling a child about their diagnosis and seeking diagnosis as an adult.

• Diagnostic Pathways http://www.autism.org.uk/about/strategy/2010-strategy/diagnostic-pathways.aspx 
• Diagnosis for children http://www.autism.org.uk/about/diagnosis/children.aspx
• Diagnosis for adults http://www.autism.org.uk/about/diagnosis/adults.aspx There is a good section on the benefits of adult diagnosis within this page which might help explain why we want diagnosis to professionals.
• Telling you child about their diagnosis http://www.autism.org.uk/about/diagnosis/children/recently-diagnosed.aspx

​What a lot of people don’t know about me is the backbone to my success as a business women (wow did I just write that 🙀) and in fact to just being a semi successful human being is Mark my husband. I rely on him so much to support me through the day. He’s kinda like my mini brain 🧠 in hand in that if I’m in stressful situations or if things change and I’m struggling to accommodate the changes he’s always on the other end of the phone to listen, remind me of my calming strategies that usually I’m too anxious to remember myself and to distract while I work through things.
 
Example: I’m in the hairdressers and really need to pee, not something I would normally do while I’m here, but I’ve had too many coffees on this particular trip to have my hair cut, anxiety will do that to you. So, going to the toilet, sounds easy right, just ask to use the bathroom and go. Nope, suddenly my anxiety shoots through the roof. You see there are a number of barriers in the way. Firstly I have to get the attention of someone walking past to ask “can I use the bathroom and where is it.” How to do that and what to say escapes me as my anxiety rapidly increases. Secondly that’s not a transition I usually make in this space, it involves walking to other side of room passed lots of people and behind a curtain. Lastly peeing in public toilets is a particular fear of mine dating back to school when I was bullied in the girls’ toilets.
 
Mark to the rescue…… CRASH, BOOM, POW (Super hero noises haha!) What follows is 10 minutes of texting furiously as he helps me to calm down, reminds me of what to say and distracts me with jokes as I make my way to the toilet and back.  Together, I made it, no wet pants lol! There have been times when I was younger where I would have had an accident rather than ask for the toilet. Same difficulties different time in my life.
 
Transitions is always something I’ve struggled with and I’m not just talking about those big transitions in life, sometimes they’re easier to be honest. Its the small daily transitions. Just this week on the way home from training a couple of things happened, I needed petrol desperately and also needed at some point throughout the evening to go to Tesco for printing paper to print the  following day’s seminar booklets, both things requiring immediate attention. My first defence is as always to phone Mark and boy did I try super hard to manipulate him into saying “it’s ok, come home and I’ll go get printer paper and petrol later” The reason being normally I would finish training and drive straight home, have a bath which helps me transition out my work clothes and into something more comfortable, watch tv on my phone for a wee while and then make dinner. Going to the shop or stopping for petrol is such a break from my routine that it immediately raises my anxiety level. I’m also super exhausted from supporting people all day and the thought of going into busy sensory environments and talking to and being around more people is overwhelming.
 
I guess something else you need to know about Mark is that he’s very good at knowing when to say yes don’t worry I’ll do that or come pick me up and we’ll do it together (this really helps) and when to say no you need to do this yourself and then support me to do it. So, the upshot was after tantrums over the phone for 10 minutes I gradually came to the conclusion that if I didn’t put on my big girls pants and brave Tesco I would only have to venture out later on and do it which definitely wouldn’t be good. So, earbuds in, quick run through in my head of the route to take to the paper aisle and till, head down so I didn’t make eye contact with anyone and thank goodness for self-service, ten minutes later job done. There was no way I was going to the garage though 🙀 Luckily, I made it home however in the past this reluctance to break routine and go for petrol has led to me running out and getting stuck places. The car showed twenty miles of petrol left, that’s low and apparently will eventually wreck my car driving it around that low on petrol, I know this but the transition to the petrol station is just too difficult.
 
Back at home I’m crabby following the stress of the situation so I rush in the door, quick kiss on Mark’s forehead, a routine I follow religiously before any of my many baths a day, then upstairs to the bathroom.
 
Travelling on public transport is another huge difficulty I have, if given a choice I would avoid like the plague and always travel in my car. The car acts as a safe (green) space for me so if anxious while out and about if I can get back to the car and lock the doors that would be the first option. I do often have to travel on planes and trains though which can be a sensory nightmare for me, just the unpredictability of the environment can quickly send me into a spiral of anxiety which leads to me again not remembering any of my coping strategies. Noise, smell, tracking the movement of people rushing about but mostly the fear of anyone touching me is unbearable at times. Again, Mark is there on the other end of the phone to remind me “Have you got your headphones, put them on and listen to Kate Bush” or to distract via text so I’m concentrating on my phone and manage to block out some of the sensory disruptions.
 
Checking with Mark that what I’m writing in this blog is ok and he’s reminded me of another thing I do on a daily basis is before speaking to people I always run through the situation with him practicing what to say and often writing this down as a reminder. I know I also rely on him heavily to help me dissect conversations that have taken place throughout the day, analysing what has been said, what the persons intentions might be, whether what I said was ok. This stems from a real difficulty understanding people, facial expressions, body language etc which can leave me not only feeling exhausted but often confused and agitated by my efforts to communicate. Without my personal hero I would ruminate on these interactions for hours breaking them down into minute detail leading to lack of sleep and more exhaustion and generally being very unkind to myself in the process.
 
Its takes a very special kind of person to take on the role of a personal super hero……don’t you agree? I think as a parent of an autistic child or adult we are all assuming this role on behalf of our children which is why when I hear parents say that they have people in their lives who tell them they are bad parents it makes me angry. I know that if Daniel could he would tell us we are his personal super hero’s too as we tirelessly advocate on his behalf to support him to navigate his way through life.
 
Taking the world on my shoulders as I’ve tried to do in the past is never the best option although it may feel like the easiest one at the time. It taken me 44yrs to come to this conclusion and I'm very lucky to have a network of people I can trust and reach out to, although Mark will always be the number one. Everyone needs support and although they may not realise it will have their own super hero. Parents, grandparents, siblings, friends, counsellors, therapist or just people who take the time to ask “Hey how you doing?” every now and again. We all need a helping hand from time to time and my advice would be to take it when its offered. 😊

 
So, it’s been a few weeks since my last blog post. Life’s like that sometimes I guess, you really want to do something, but other things get in the way. Mostly for me it’s been work, it does have a habit of getting in the way lol! 😊
 
Another thing we’ve been dealing with over the past two weeks as a family is PAIN. I’ve had a dental abscess which refused to go away despite a couple of trips to the dentist and a course of antibiotics and Dan’s been ill, recovering from shingles. OH and I also had a spur of the moment fit of madness with a friend and went to get my ears pierced!
 
Whilst delivering training last week I was telling a group about my toothache, by way of explaining why I looked like I’d been “dragged through a hedge backwards” To explain, being in pain plays havoc on my sensory processing system, particularly my touch senses which become even more heightened. I’m usually very oversensitive to touch and being touched by others often provokes a pain reaction.  I’m the person who would tell you “Ouch you’re hurting me” when you brush past or lightly touch me.
 
Knowing this, people often ask me how I manage my sensitivity to touch. In the past, pre-diagnosis, I guess I didn’t, finding myself in situations requiring touch often led to me becoming agitated and being snappy or short tempered with people or making comments like “are you close enough,” “step back,” “what are you looking at.” (If i'm honest I still do this sometimes OOPS!) I remember this causing my mum embarrassment and her trying to manage it by telling me to shush or think about what faces I was making at people. Nowadays, post diagnosis, with more knowledge it’s really a combination of actively avoiding situations where people might crowd round and touch me or sometimes if I feel comfortable with the environment and the people I’m with explaining I don’t like touch and asking that either they don’t actually touch me or that if necessary they talk me through it. Alternatively asking them to use deep pressure touch instead. I have also to some extent desensitised to some touch from people I’m close to. (which to answer a question I'm often asked is how I've managed to have two children. Wink wink smiley face)
 
So, you went to get your ears pierced! I hear you ask....
I’d always wanted to get my ears pierced and one day while spending some time with Lynsey my friend she mentioned she also wanted hers done, so we decided on the spot, or I guess I decided “Hey let’s get them done today.” 😊 I know Lynsey was shocked as she knows how painful touch is for me. However, she went with it and before we knew it we were in Claire’s sitting on the chair. 
Very strange behaviour for me. Lynsey recently used our experience in an autism training session she delivered as an example of how motivation can help us to overcome fears and sensory pain. I knew she understood and so I was able to tell the lady piercing my ears that I was oversensitive to touch and would find it painful and therefore could she please talk me through everything she was doing with regards to touch. This helped me anticipate her touch and made it easier. Lynsey also pressed my hand really hard which provided deep pressure. This has a calming effect on my sensory system. Ten minutes later I had two pierced ears. (always good to get two done so you don't end up looking like an 80's pop star) So, in this example motivation supported me to overcome a difficulty.

​However, there's no motivation in the world that can help to overcome toothache lol! 😊
 
Being in pain with the toothache is painful anyway as I’m sure we can all agree, but add to this the heightened touch senses, then not only am I dealing with pain but also the affect this has on my ability to;

• Tolerate clothing; the clothes I normally wear suddenly making my skin feel like it’s burning, and I was being stabbed with pins and needles. Dramatic eh! I’m thinking this is accurate though based on a time when I spilled boiling oil on my leg.
• Carry out daily care routines such as bathing, washing and drying hair, brushing hair, toothbrushing etc
• To spend time with others for fear that they might brush past me or touch me, so being in social situations like delivering training at work, visiting friends, queueing in the supermarket etc became almost impossible.  

 
Linking back to the training, what followed was a discussion centred on the fact we are often told as autism parents that our children don’t feel pain by way of explaining why our children don’t respond to pain perhaps in the same way as other children.
 
We’ve had a few experiences of this with Dan where well-meaning individuals would tell us he doesn’t feel pain. One example being when he fell under a roundabout whilst on holiday and broke his leg. As an aside, by coincidence this was the same day we watched Jimmy Saville running in a marathon: obviously not knowing what we now do. Perhaps it was an omen for how the rest of our holiday panned out.

Back to Dan, showing very little reaction to the pain in his leg, but very upset about the visual of blood coming from a graze on the other knee, it took the hospital a while to work out he’d actually broken his leg. It’s easy then to draw the conclusion “he doesn’t feel pain” but is this right? I don’t think so.

Another example was when he had appendicitis. We started to notice him being a bit more agitated, withdrawn, not wanting to move much but when asked he would just say he felt funny or get upset and withdraw back to his bedroom. Hours later he managed to say his tummy felt weird. Putting this down to a sore belly we tried to console him and told him it’s ok the pain will pass soon. It wasn’t until we saw physical markers like him going grey that we became concerned. We rushed to the hospital where again he explained it, to the doctor, as being a funny feeling in his tummy but was unable to categorise the pain in terms of 1-10, it was some while later they eventually worked out that his appendix was about to burst and needed to be removed. After the event we understood from the surgeon that he must have been in horrendous pain.

A question I’m often asked around pain is “My child reacts to a paper cut or wee bit of blood like it’s the end of the world, but he fell and broke his arm and didn’t react. Why is this?”

It may be the case that like Dan, the child reacting to a visual change in their body, something that isn’t meant to be there, and that you can’t see the changes that happen internally like broken bones. However, we also must consider that we experience touch via two sets of sensory receptors.
​

• The external touch (Tactile) receptors which feedback information to the brain about where on your skin you are being touched, the brain then determines whether this is hard, light, pleasurable or painful touch.

 

• The Internal body spatial awareness receptors (Proprioception) which feedback information via your muscles and joints about where various parts of your body are and how to move them to perform tasks. These receptors also give information to the brain from your stomach, bladder and bowel to let you know whether you need the toilet or are hungry or thirsty or full and need to stop eating.

 
It’s possible a person can be over sensitive to their touch receptors and so like me overreact to touch but then be under sensitive to the body spatial awareness receptors causing disruptions in how we experience and react to breaks, sprains, feeling hungry, toileting etc.
 
It sure is complicated when you start to break it all down. I thought it was time to look for research looking into pain registration and autism. 
 
Although as with the examples above we understand that pain processing in individuals with autism can often deviate from the norm and pain processing has often been noted in clinical observations of patients with ASD, it remains largely under investigated.

We understand from research that the brain’s response to pain has three phases: early, intermediate and late.
​
A recent study in 2015 where individuals where asked to experience a heated plate on their calf while under an MRI scanner showed that autistic individuals had the same initial reaction to pain as those not on the autism spectrum. The metal plate was heated to 49 degrees Celsius, the metal stayed hot for twelve seconds then cooled. The study showed that the group of autistic individuals showed similar levels of brain reaction to pain for the first seven seconds or so during the early stages of pain recognition. This highlighted in the somasensory region of the brain, a part of our brain responsible for registering and interpreting touch, proprioception, temperature and pain. During the last five seconds whilst those without autism continued to show registration of pain, amongst those with autism all activation in the pain network disappears.

These patterns suggest that the brain’s initial processing of pain may be normal in autism. But later steps in pain processing, having to do with cognitive and emotional evaluation of pain, may not be.

This makes sense to me in terms of our situation as Dan often describes that he feels funny or sometimes will be able to say he’s in pain, so is registering a difference in feeling but then his ability to cognitive and emotionally explain where the pain is or what it feels like is very difficult. So, It’s not that a person can’t feel pain but rather as the study suggests pain registration happens normally but either diminishes quickly or the cognitive emotional ability to understand the pain in any detail and communicate this is difficult.

Other Studies in which volunteers are subjected to mild electrical shock, pressure, heat or cold suggest that people with autism have normal pain thresholds or may even be more sensitive to pain than others, like in my situation. Other studies add to this by looking at the alterations in pain perception faced by people on the autism spectrum and how those changes can affect them in social functions.

New research published in 2017 by a University of Texas neuroscientist, Dr. Xiaosi Gu, looked at alternations in pain perception and how anticipation of pain affected autistic people. 1
 
Dr Gu states that
 
“The risks of encountering pain are part of daily life and are normal for non-ASD individuals, but may be overwhelming for autistic people. Therefore, one possible explanation of our finding is that to protect themselves, individuals with ASD may not engage in social interactions as much.”
 
This research is important because it lets parents and professionals know that there are physiological reasons behind a person’s inability to express or explain painful reactions and to spend time in some social situations.

So how do you tell if someone with autism is experiencing pain?

• Observe changes in the person’s demeanour Is the person sweating? Are they shivering? holding their breath? Have you noticed a change in their colour? The human body has ways to express its discomfort that we can see. Keep a careful eye on your child or the person to see how they are behaving.
• Pay attention to unusual behaviour Is the child lethargic while listening to music they would normally dance to? Do they seem like they don’t want to move, or less engaged than usual during activities they normally enjoy? Or maybe they are acting out more than usual. Difficult days and challenging behaviour can sometimes be the sign of an underlying health problems from those who can’t use words to describe what’s happening. Remember its not just non verbal people who may find it difficult to find words to explain pain and discomfort. 
• The Non-communicating Children’s Pain Checklist is helpful as it contains a checklist of observations to look for if the person can’t communicate how they feel, and can be filled in and taken to a doctor or hospital if necessary.

How to help

• Introduce words associated with pain, hunger etc. For example, a boy I used to support suddenly started to bite others, this was unusual for him. We determined he had toothache and so were able to tell him whenever he tried to bite “Pain, teeth sore” and to also show a picture card relating to toothache. Next time he experienced pain he was able to tell us “Pain teeth sore” It just so happened that time it was tummy ache he had so we repeated the same system “Pain, tummy sore” and showed a visual. This helped him to build his vocabulary to explain pain in his body but also to at times when he couldn’t communicate this verbally use visuals to show us.
• Introduce a pain chart 0-10 ​ If the person already has an established vocabulary around pain then introducing a chart to help them indicate how they are feeling may help.  Here is another example commonly used by NHS staff

• Build a hospital passport 'My Hospital Passport’ is a resource for people with autism who might need hospital treatment. The passport is designed to help people with autism to communicate their needs to doctors, nurses and other healthcare professionals. It was developed by Baroness Angela Browning - an NAS Vice President - in collaboration with The National Autistic Society.

​                                                              This is a link to the passport.  

Well lots has been happening this week not least finding out my hairdresser is pregnant 🙀
 
So here’s an interesting debate…….Mark my husband tells me I should start this post by saying “I am absolutely delighted for her” The reason being that I wouldn’t want anyone reading this to think I’m a horrible uncaring person or my hairdresser to read this and think I’m not happy for her. 😓To be honest this never crossed my mind till Mark said, but thinking about it more I wonder would this be me masking my emotions in written word so as to appease people who don’t fully understand autism and therefore help me to fit in?
 
I think about this and come to the conclusion its complicated in that what actually happened was…….
 
I'm sitting in the hairdressers chair and she tells me she has exciting news, she's pregnant. I remember relatively quickly that the social norm is to congratulate first. So I do this. Congratulating her I feel I’m perhaps worthy of an Oscar, I even managed to smile it out, but when I said too loudly “but how will I get my hair cut?” a glimpse of the inner anxieties I try hard to hide shines through. Whilst others in the room were in agreement this is lovely news, I’m left with 101 reasons why this may be the worst news possible.
 
Quickly I try to draw on personal experience, something I know lots of people do effortlessly but for me it very much has to be a very conscious decision. I can’t let my anxiety out especially as I’m not in a safe environment. So I try hard to remember that moment when I found out I was pregnant with my son. I have lots of difficulties with my personal autobiographical memory and so this is difficult for me, but I do know that being pregnant and having my children is the best thing that's ever happened to me; they’ve changed our lives in so many amazing ways. I like my hairdresser very much and so then it’s not too much of a leap to think yes I want her to experience the joy and love of bringing a child into the world. I am then very happy for her; of course I am. I imagine she is going to be an amazing mummy. 😊
 
Listening intently to the other women in the hairdressers talking, I manage to continue our conversation and ask those pivotal questions “when are you due”and “do you want to know what you’re having?” Whilst in the background the real questions start to invade my brain. 🧠
 
To explain, for me this situation is going to mean a massive change and I struggle with the uncertainty of what this change then means to me and imagining how I will get through it isn’t easy. Along with my diagnosis of autism I was also diagnosed with Sensory Processing Disorder, something which affects me greatly in all environments, not least the hairdressers.
 
With my current hairdresser I've learnt over time to desensitise to her touch, understand how she moves around me and to navigate some repetitive small talk. This took months as it also did with my dentist, who I’m slowly becoming less anxious around.
 
As a side note, he asked me recently when you started coming here you would fidget and tick constantly and twiddle with items, you don’t do that as much now what’s changed? Simply put, I’m slowly desensitising to the environment and to him.  He thought I was scared of the dental treatment, when in actual fact it’s him touching me and the dental nurses moving around while I lie still, I struggle with.
 
Back to the matter at hand.....

For me changing to a new hairdresser is difficult and challenging, a new face with new facial expressions, body language, desensitising to new touch (I’m hyper sensitive to light touch and can find it painful,) new smells, understanding and navigating new conversation patterns. Isn’t this enough? But then also in my hairdressers change of person means change of seating position so change of visual outlook, change of sound impact from people around, hearing the music on the tv from a different place, change in transitions through the space; so having to re navigate where the toilet is etc, the list is endless. In my head it certainly is as I start to catastrophise the situation.
 
Currently, I manage to cope with a busy hairdressers by being open and explaining how autism affects me in that environment. I’m lucky that I’ve found a lovely hairdresser who whilst perhaps not knowing much about autism, listens and tries to accommodate my needs.

For example;

• Letting me sit in the same chair and giving prior warning if I have to move chairs. I’ll still make faces but will move if given time to process.
• Not asking if I’m happy with my haircut (I don’t like to look in the mirror so I’ve explained I process my haircut later at home looking in my own mirror, therefore it doesn’t help if she asks me if I’m happy with my new haircut. I don’t know yet; I haven’t processed the visual change, although when asked I'll make the effort to give the desired response "yes i love it")
• Not being offended if I say I don’t want to talk today and would rather she just got on with the job of cutting my hair. I often sit with headphones in whilst reading a book on my phone; distracting my sensory system from visual and sound input in the environment.
• Knowing that there’s no point asking how I want my hair. There are infinite ways to style hair and I can’t imagine which one suits me. So I’ll go with what she did last time please.
• Not making any unnecessary transitions within the environment so it’s a direct path to chair, sink and then to pay.

 
Having incorporated these strategies into the environment I manage to cope better. However, having a haircut still leaves me feeling absolutely exhausted. A haircut is often closely followed by a bath and a few hours of downtime to recover from the burst of social energy withdrawal.
 
My initial thoughts after this visit to the hairdressers is that I know I’m going to have to adapt and develop these strategies to fit in with a new hairdresser when the time comes and that this is going to be difficult. I’m confident though that they will continue to be supportive and understanding.
 
I’ve not yet finished processing the full extent of the situation or how I’m going to overcome it. As is often the case I’m onto ruminating about something else. From experience, I know I won’t revisit these anxieties till I’m back in the hairdressers in four weeks time. So I’ll come back to this topic later and keep you updated on its progress.
 
Some tips which may support autistic people in the hairdressers are;

• Find a hairdressers who you can talk to about the persons autism and how it affects them prior to a visit
• Practice going into the environment without the expectation of a haircut for a period of time
• Ask the hairdresser  to show and explain the equipment they are going to use and give opportunities to explore these
• Pick a hairdressers in a quiet street to lesson the environmental impact coming from outside the building
• Asking if the hairdresser will stay open later or open earlier to cut your child’s or your hair
• Going for a rehearsal; watching another person have their haircut first
• Introducing a visual timetable which has the hairdressers visit incorporated
• Giving processing time via a sleep chart or calendar counting down to the haircut
• Write a social story about what the person can expect during the visit or take photos and make up a photo book
• Think about seating position, sitting near door or away from door and  heavy footfall
• Giving options to sit away from mirrors although some may prefer to see what is going on as it helps them predict the stages of the haircut.
• Making sure the person has sensory adaptors available, sunglasses if lights hurt them, headphones with calming music or ear defenders if noise is an issue, twiddle toys or a device to play videos or games on to distract the  senses, items with familiar and comforting smells such as hanky, scarf or smell on the cuff of jumper if  the person struggles with strong smell of hair dyes and cleaning materials and having weighted items to sit round neck or lap or a wobble cushion to sit on if they have difficulty sitting still  for long periods
• Making sure the persons feet have contact with the floor or a box  to help with balance issues.
• Giving deep pressure massage to the head and neck area prior to washing and cutting hair. This will desensitise the area and have a calming effect on the sensory system.
• Avoiding words like cut as this can be scary especially if you are a very literal thinker
• Talking the person through the different stages of haircut
• Using timers of explaining how many snips till haircut finishes or time for a break
• Introducing a motivator system

Remember everyone’s experience of the hairdressers will be different depending on their individual autism profile and sensory processing system and so some of these strategies may work, some might not. 
 
This is a link to The National Autistic Society help sheet on hairdressers and dentists  http://www.autism.org.uk/about/family-life/everyday-life/hairdressers.aspx
http://www.autism.org.uk/about/health/dentists.aspx

Desperately looking for some inspiration on what to write my first blog post on, I stumbled across the above quote that I wrote down some time ago. I think if I remember I liked it due to its literal quality, something I can take great comfort in and at other times really struggle with.

Being a literal thinker can be humorous and we all know funny examples where you hear a person say “that was a piece of cake” and expect cake to appear or “she has legs like a giraffe” WOW really, where does she buy her clothes. 😂

​But it can also cause anxiety and distress, like the example I often give at training of the wee boy who hears his teacher say she is dying of the cold then is scared to go to school the next day and when he then gets the cold wonders if he is also dying. 😢

For me, thinking and reading literally often gets me into trouble, mainly around situations where I’ve not understood properly which then leads to me making social faux pas.

Faux Pas
1. a slip or blunder in etiquette, manners, or conduct; an embarrassing social blunder or indiscretion. Origin of faux pas. 1670-1680. 1670-80; < French: literally, false step.

As a 44 year old I’ve learned over the years how to translate many of these hidden literalisms in conversation, although as I was telling someone the other day I still see the visual of what it might mean in my mind. An elephant in the room or someone opening a can of worms eeek!
​
I personally tend to struggle more with the written word, however depending on environmental factors such as lack of sleep, feeling ill, increased social anxiety or a build up of social energy withdrawals I still have great difficulties with social communication.

Do you have an example? I sure do........

I recently had a really important training day approaching and I asked a friend and colleague “any tips for tomorrow?”

She replied “just don’t mention bras or talk about underwear lol!” To put this into context I have lots of sensory clothing difficulties and often mention out loud my underwear is bothering me.

Ordinarily, I may have picked up on the “lol” at the end of the sentence and worked out she was joking and being lighthearted, trying to calm me down by making me laugh. Sadly that’s not what happened. I read it literally, I missed the "lol" at the end. So I'm thinking “OMG! yes I must not mention bras and underwear; this is really important advice for such a day” Now, had she put an emoji of a laughing face 😂 there’s a possibility this would have registered quicker in my brain, but it does depend on level of anxiety etc.

Skip forward to the next morning as I arrive at the venue with my new mantra “don’t talk about bras don’t talk about underwear” suddenly there’s no room in my brain for the important stuff, like remembering what you’re going to train on today. I literally could not make way for thoughts due to this mantra going over and over in my head. So this then leads to something else I’m often guilty of doing, speaking my mind, saying it like it is. For me it’s simply getting it out my head so I can make way for new thoughts but for others I understand it may be embarrassing. Luckily I think I managed to incorporate it into a joke and so "flying by the seat of my pants," (see what I did there another literalism) I get it out and then carry on with training.

Reflecting later on in the day I’m not so sure; could it be deemed inappropriate and lead to me not being taken seriously as a professional or does it make me human and people can then relate better to me? After all, we can all be guilty of making social faux pas cant we? Rationally after much rumination, I prefer to think the latter and that it’s what makes me good at what I do, because its the real autistic me in all my glory, a true representation of how autism affects many people and after all isn't this why people come to training, to learn more about autism.

BTW as a footnote; “This Thursday was nothing like last Thursday but I’d miss it if it wasn’t after Wednesday.” Thinking about this, last Thursday I was delivering to 40+ businesses on Understanding autism and how to support autistic individuals in the community, which although enjoyable was absolutely exhausting, This Thursday Mother Nature came to my aid and thanks to storm Emma and “the beast from the east” (yikes not sure I like this metaphor) I had a snow day and sat with my husband and watched TV all day. I really needed that top up to my energy bank and so I think sometimes life has a funny way of saying hey slow down, take a break. This time a healthy break.

What’s not to love about cuddling on the couch watching movies 😊

Some tips to support literal thinking and reading 😊

Many autistic adults and children may interpret language literally, thinking people always mean exactly what they say. They may find it difficult to use or understand:

• facial expressions
• tone of voice
• jokes and sarcasm
• vagueness
• abstract concepts.

Until you know the understanding level of the individual, you should avoid:

• idioms (e.g., save your breath, jump the gun, second thoughts);
• double meanings (most jokes have double meanings);
• sarcasm (e.g., saying, "Great!" after he has just spilled a bottle of ketchup on the table);
• nicknames; and
• "cute" names (e.g., Pal, Buddy, Wise Guy).

Remember that facial expressions and other social cues may not work. Most individuals with autism have difficulty reading facial expressions and interpreting "body language." Which are often the social markers that help us to interpret social interactions and communications accurately

Teaching literalisms and what they really mean can be beneficial. In the past I’ve used a really nice book called “it’s raining cats and dogs” by Michael Barton to explain. But you could also download pictures off of google of literalisms and Idioms to explain their real meaning or use social stories or comic book conversations. < Link to The National Autistic Society web page

It often helps me if people use emojis when writing as I can visually process pictures easier than written word when anxious or stressed. Checking first if the person likes emojis can be important as many people don’t find them helpful. In these situations writing clearly, making sure to avoid sarcasm or jokes is the best approach.

Hi Folks, Welcome to my new blog. I hope you like the name. If you know me well you'll have a wee giggle at the name.

Within the blog I hope to post weekly ramblings on a variety of topics, from my own personal perspective and experience but which will hopefully be relevant to other autistic people and to those living with and supporting loved ones with autism. 

Disclaimer;  all opinions within the blog are my own and not necessarily those of other people. I'm more than happy to take comments on the blog, these will be moderated for appropriateness and relevance to the topics. I won't accept any spam, trolling of me or others, any nastiness towards myself or others living with autism and any bad language.

Please do not leave personal details within comments, if you do need to contact me please use the contact page and I will get back to you. 

Whilst everyone is free to comment I cannot guarantee that I will reply to each comment. 

Also if I don't know the answer to questions or queries I will be very honest and simply tell you I don't know. :-)

Please enjoy my blog, as a very private person normally its a new journey for me and I hope you enjoy coming along with me. 

Thank You
Tanya :-)