Referral

It’s a struggle for an adult to be referred to an autism specialist, be it a psychiatrist or clinical psychologist. A big struggle. In fact, it’s damn hard and can be emotionally frustrating. Some may not agree with me on this, but it is definitely something my Mum and I have felt. I want to share with you the process Mum and I went through.

To start, Mum made an appointment with her GP for the sole purpose of requesting a referral to see a specialist for assessment, or at the least for a specialist to evaluate my Mum’s ‘suitability’ for assessment. I went with Mum to her GP appointment to help communicate things that she often has difficulty with. This is the guidance stated on the National Autistic Society website and I am so glad I followed this guidance. It really helped.

Mum’s GP listened and tried to understand as best she could in the short time allocated. Mum lead the appointment and asked for my guidance and opinion, which I happily offered. The only time I chipped in without being asked was when I could see my Mum struggle to articulate that she doesn’t have depression, or anxiety, or a social phobia (which the GP was hinting at and trying to treat). I stated openly and honestly, on my Mum’s behalf, that Mum would like to see a Psychiatrist of Psychologist for an initial assessment for Autism. Mum’s face was full of relief when I said this. Some further questions ensued, predominantly about Mum’s medical history (migraines, light sensitivity, anxiety, obsessive compulsive disorder) and family history (we talked about our cousin who was diagnosed with Autism as a child). Eventually, Mum’s GP agreed and said that an initial Autism assessment was a good idea and wrote a referral letter on the spot. Mum was exhausted afterwards, but happy, and I was so proud.

A week after this appointment I got a confused call from Mum. She explained that the GP practice receptionist had called Mum that day and asked her to pop into the surgery to complete a ‘quick questionnaire’ (no further explanation). Mum, being put on the spot and asked to break her routine suddenly, began to fret but made her way to the practice. Upon arrival in a busy, noisy, brightly lit waiting room, this happened:

Receptionist: “Oh, here you go (hands over questionnaire) it shouldn’t take you long.”

Mum: “Sorry, I don’t understand, what’s it for?”

Receptionist: “I’m not sure, something to go with the referral. It shouldn’t take you long. Just perch over there (pointing to a corner) and fill it in.”

Now I appreciate that to most of us completing a ten-question questionnaire wouldn’t be a bother. To my Mum, it was baffling and distressing. It was filled with question marks (read my ‘Question Mark’ post to see why this is a big deal), and questions without context or examples to draw upon are very difficult for my Mum to interpret. This confusion, in addition to a room full of people, bright lights and a lot of noise, does not make a conducive environment for a person with autism. None of that helps, but the key thing here is that Mum had absolutely no support in completing the questionnaire. Eventually my Mum was finding the situation too distressing, hurriedly marked any answer on the questionnaire, gave it to the receptionist and left. I was angry on behalf of my Mum and furious that she had been offered no guidance or support. I later found out that this questionnaire should be completed with your GP and, if required, a family member or friend to help place things into context. A far cry from what my Mum experienced.

Unsurprisingly a day or so later my Mum received a letter from an assistant psychologist informing her that based on the initial screening process (the questionnaire) the decision was made that Mum probably didn’t have autism and that they did not think she was suitable for assessment. Now I appreciate that the NHS is very overstretched and a lot of people are in need of the assessment service so screening processes need to be in place. But how can someone who has never met my Mum decide that she isn’t suitable for autism assessment based on the result of ten questions? This is an issue in itself, not even considering the conditions under which my Mum completed the questionnaire. The most heart breaking thing was that Mum sounded so confused and deflated when she told me this. What is she supposed to do now? If she is not autistic, where does she go from here?

At the risk of sounding interfering, I wasn’t willing to accept this so I gave the psychologist a call. After a quick call between the psychologist and Mum, I was able to speak on Mum’s behalf and I explained the entire situation. She was very understanding and appalled that Mum had not had the right support or guidance she needed to complete the questionnaire, so much so that she invited Mum down to her office a couple of days later so she could re-do the questionnaire with the appropriate support. Mum and I were thrilled.

Even though the psychologist was very supportive and tried to provide adequate examples to provide context to the questions, it still took Mum and hour and a half to complete the questionnaire. I think this is because the questions are rather open-ended and broad ranging, such as ‘Do you see the whole picture or focus on the detail?’ with several possible answers such as ‘strongly agree’, ‘agree’, slightly agree’ and so forth. I would personally find that question a struggle to answer. For a person who has difficulty with aspects of communication and who interprets questions differently to most, this questionnaire is cognitively inaccessible! Luckily, in addition to recording Mum’s questionnaire answers, the psychologist made a lot of notes on Mum’s characteristics, communication manners and her stories (Mum, when asked a question she has difficulty understanding/answering, will often talk about things she knows inside out, such as me, family or work).

A week or two later, Mum received a letter from the psychologist inviting her to undergo the full assessment for autism. When Mum told me she sounded so happy and I was over the moon! Mum would be able to spend a lot of time with specialists who would provide a comprehensive and thorough assessment. At the same time, I couldn’t help but think that it hadn’t been an easy process. These are the key questions I kept pondering:

– What about individuals with autism that may not have family members to support them through the referral process? What happens if they struggle with the questionnaire and are not assessed thoroughly as a result?

– Why is the initial screening questionnaire not autism friendly?

– In fact, why is the initial screening questionnaire only comprised of ten, poorly worded questions?

– Why aren’t all GP’s ensuring the questionnaire is completed with their assistance?

– How can you say that someone doesn’t have autism when you’ve never even met them?

I know it’s all very well and good for me to ask these questions – I don’t work in a busy, over-subscribed GP surgery or an under-resourced and over-stretched NHS department. But still. To me these are basic questions which need to be addressed. If anyone has the answers, please do let me know!

Aeroplanes

My mum has a paradoxical relationship with aeroplanes. If we’re walking down the street and Mum hears the familiar rumble of a low flying plane, she immediately stops and cranes her neck up to the sky. Her face lights up with excitement when she spots the plane and she’ll stare whimsically as it glides by. If you’re ever in Mum’s presence when she hears or sees a Chinook or a fighter jet, you’re in for a treat. She will scramble to the nearest window or almost drop her shopping bags with anticipation; the look of wonder and amazement on her face when she sees one of these beauties will stay with her long after it’s soared away. It’s a very innocent, child-like reaction which I am often baffled and awed by.

The paradox is this. I have never, ever, seen anyone react so strongly to plane travel as my Mum. It breaks my heart to watch, yet she frequently puts herself through it as she enjoys going on holiday. Let me walk you through my Mum’s behaviour on a plane:

– She becomes mute. You can’t talk to her and there is no way on this earth she will talk to you.
– She becomes oblivious to anyone and anything.
– She cries quietly.
– She will curl up in an extreme ‘brace’ position: feet off the floor, knees curled up, back hunched over, hands covering ears.
– ‘Stimming’ happens. Mum will rock back and forth and sometimes flap her hands.
– Her face is one of pain, fear and anxiety.

This is a highly distressing situation for Mum to be in. For years my family and I thought she may have a severe phobia of plane travel, but it never quite made sense. How can someone so taken by the sight of an Airbus A380 be so, so scared of travelling on one?

We’ve since learnt that it’s not a phobia, it’s a ‘meltdown’. I feel incredibly frustrated with myself for not realising this sooner. My understanding is that the term ‘meltdown’ is used to describe the state of an individuals with ASD when they experience intense psychological and emotional distress from being in an overwhelming, sometimes sensory-overloaded situation. That is a very general way to describe it. Not every person with ASD will experience them, and those that do, their meltdowns will manifest in different ways and I’m sure they’d explain it differently to the way I have.

The noises, smells, atmosphere, people and sensation of being on a plane is just too much. When I asked Mum what I should do when she has a meltdown, she said “Just leave me. Let me go through it. There is nothing worse than someone trying to reassure, comfort or stop me.” I’ve found this very difficult to accept, but understand that my Mum needs to deal with this in her own way; she knows her own personal limits. But I can’t help but feel that the anxiety Mum experiences pre, during and post-travel surely negates the aim of a ‘relaxing’ holiday? One day, I hope this is something Mum will discuss with her psychologist who will provide guidance and coping strategies which may alleviate some of the anxiety.

There is minimal literature on adult meltdowns. I want to raise awareness of the fact that they do happen and they are distressing. Mum’s meltdowns have never involved aggression or physical violence, however I know that her distress causes her physical and mental exhaustion. Although it’s difficult to witness, the best thing my family and I can do is to understand and support her. We make sure she has her favourite Muse song on repeat on her MP3 player, ready to shut out the overwhelming noises. I’ll politely ask those around her to not reassure her by patting her shoulder or to ask her questions. I’ll let the air stewards known that she is okay, she just needs space and to be left alone. And I’ll very kindly ask if s/he can bypass Mum when it comes to the in-flight meal. I often feel like a helpless daughter, but this is at my Mum’s insistence.

When chatting to Mum the other day, I was convinced that a cruise was the solution. Beautiful sun and endless sea, everything catered for and, best of all, no flying. Mum responded with “Hmm. I was thinking about that too…but I don’t know if I like the idea of being on water for a week. I like dry land. What if I boarded the ship and had a week-long meltdown!?” Perhaps holidays in Cornwall are the way forward.

The Question Mark

The question mark. Such simple, necessary punctuation that we use daily without giving a second thought. I personally have nothing against the question mark. My Mum, however, does. She has very strong views on the question mark. I’d go so far as to say that she despises them.

I was talking to Mum a few days ago about a particularly busy and stressful day she had in work. The conversation went like this:

Mum: “I was trying to complete this piece of work and I kept getting e-mails with question marks everywhere. Question marks! Why where they sending me e-mails with question marks all over them!?”

Me: “Erm, what do you mean? Question marks? As in they were asking you questions?”

Mum: “Yes! But with question marks at the end! Question marks! Oh I find them so very offensive.”

Me: “But Mum, they will have needed to put a question mark at the end of the sentence if they were asking you a question.”

Mum: “Well I know that, but I still can’t stand question marks. When I see one in an e-mail I feel as though I’m being shouted at…like that person is being very, very offensive. Why don’t they just put an exclamation mark instead! That’s what I always do!”

Me: “So in work you ask questions over e-mail with an exclamation mark at the end of the sentence?”

Mum: “Yes. It’s much better.”

We laughed a lot throughout this conversation.  Please don’t think that I laugh at all my Mum’s perceptions, thoughts and behaviour. I don’t. However my Mum just told me that she gets very offended by a question mark. I found this very funny. But one thing to know about my Mum is that she has a wicked sense of humour. She may not ‘get’ mainstream jokes and sarcasm very well, but she finds the most odd, dark, strange, sometimes un-funny things extremely funny. Mum think’s the ‘neuro-typical’ things I do are bizarre and hilarious. Sometimes my Mum’s ASD ways make me laugh out loud. And more often than not, when the pair of us are alone, we’ll be laughing our heads off at some new revelation of hers or mine. And we both love this part of the learning process.

So, back to the question mark. We talked some more about it and Mum told me that to her, a question mark looks like an old, shouty, angry man whom she finds very aggressive. I did some research and found out that Synaesthesia is three times more common in adults with autism compared to the general population. Synaesthesia is a condition where one sense automatically triggers another. Some people experience tastes when they read or hear words and some perceive numbers as shapes. My mum sees an angry, shouty old man when she sees a question mark.

Why am I telling you all this? Because perception is everything. The way my Mum perceives the world, from people, animals, light, sounds and even the humble question mark differs vastly from the ‘norm’. My Mum has spent her entire life trying to adjust her behaviour and thoughts so they align with everyone else and it exhausts her. I think it’s about time I adapt my behaviour to best support my Mum and I hope that this will encourage those around me to do the same – it’s not always possible, but it’s the little things. A recent text from me to my Mum looked like this:

“Hey Mum! How are you! How’s your week at work been! Lots of love xxx”

There will be hundreds of instances like this that we’re both yet to discover. The more time I take in understanding where our perceptions differ, the more I can understand the incredible way my Mum thinks and acts.

Hopefully this means that I can better support my Mum and offer advice when she has no choice but to encounter a question mark.

Hello everyone!

Welcome to myotherworldlymum. My name’s Rachael and I’m a 29 year old female living and working in London, UK. I’m originally from the North of England and grew up in a small town near Liverpool. I am very close to my family, all of whom live in or near Liverpool, but particularly close to my Mum. Or as I like to call her ‘my other worldly mum’. Let me explain why.

About a year ago I went to a conference in London to learn about Autism Spectrum Disorder (I’ll refer to it as ASD) in adults. I settled down in my seat, smiled at those around me and had my pen and paper poised, ready to take notes. The woman who hosted the conference introduced herself and started by outlining some statistics about ASD:

– There are about 700,000 people in the UK with ASD. That’s about 1 in 100 people.

– It affects children and adults. Children with ASD will grow up to be adults with ASD.

– ASD is often ‘hidden’. You can’t always tell if someone has it.

– Because of a possible male gender bias, it’s thought that females are less likely to be identified with autism. However, ASD diagnoses in females is thought to be increasing.

The conference speaker then outlined some key traits those with ASD often show, such as difficulties with social communication. People with ASD may not get jokes that easily, they may not understand sarcasm and they may have difficulty understanding certain types of speech or tone of voice. I immediately thought of my Mum and smiled to myself “How funny” I thought. My Mum’s like that. She never gets jokes and pretty much takes what you say literally, regardless of how sarcastic your tone is. My Mum told me once that her work colleagues have asked her to ‘stop shouting’ when she was speaking. My Mum had no idea she was speaking so loudly. At the time we laughed about this and we joked about her ‘getting old’. I shrugged this off and carried on listening to the speaker.

“Someone with ASD may have difficulty with social interaction” the speaker informed us. “For instance, it is quite common that someone with ASD may not like to be touched and it may be distressing for that person if someone tries to hug them or touch their arm when in conversation, for example. People with ASD may prefer to be alone and avoid social interaction completely. This can make it very difficult to make friends.” The speaker took some questions whilst I sat there, feeling confused. It has been a running joke in our family about my Mum never giving people, apart from me, hugs. She shies away from any type of contact. My Mum will always hug me but the pair of us laugh about her ‘unique’ hugging style. She will tense slightly when I envelop her in a ‘bear hug’, as my Mum calls it, and will pat my back repeatedly as though she is winding a baby. My Mum does not have any friends and has often said to me “my family are my friends, they’re all I need”. She doesn’t socialise at all and the idea of going out for the evening is her worst nightmare.

“Also, those with ASD commonly have difficulty with social imagination. They may struggle to imagine situations outside of their routine and may engage in repetitive behaviours.” This description fits my Mum perfectly. She visibly and mentally frets if her routine is disrupted and will look alarmed if anyone, myself included, tries to help her with a usual routine such as hanging washing out, cooking dinner etc. She was even diagnosed with Obsessive Compulsive Disorder as a child.

The speaker continued. “It is also common for those with ASD to have sensory sensitivities. For instance a person with ASD may dislike the feeling of certain clothes and fabrics, or may be sensitive to particular noises, smells or lights.” Until this point I worried that I was over-thinking things, surely my Mum doesn’t have ASD, she’s just a bit different to everyone else. This is all a coincidence. Plus, I didn’t want to start diagnosing my Mum…I’m not a health professional. But the issue about sensory sensitivities struck a chord with me. Mum can’t stand the feeling of particular clothes against her skin and has suffered from migraines for as long as she can remember, which are often brought on because of bright lights. Was all of this just a coincidence?

I spent the rest of the conference trying hard to listen to what each speaker was saying, but my mind kept drifting to my Mum and her ‘quirky ways’, as my family and I often called them. My Nan (my Mum’s Mum) who I am also very close to, often said that Mum was quite a difficult child and that even as an adult she thought my Mum was always a bit different to everyone else. I started to think that maybe there was more to my Mum than just being ‘quirky’. I did some more research at home, mainly reading about ASD on the National Autistic Society website. I wanted to understand as much as I could before I mentioned this to my Mum.

A couple of weeks later I travelled home for the weekend and was greeted at the train station by my Mum and her beautiful, big smile and a ‘baby winding’ hug. It was Friday evening so I knew that my Stepdad and I would be having spaghetti bolognese followed by chocolate pudding and custard. My Mum would always have her own meal, usually consisting of plain pasta, tuna or meat-free ‘chicken’ and sweetcorn. I threw my bags into my bedroom and joined my mum downstairs for a cup of tea. After a little while I asked my Mum if I could show her something online. A few days ago I’d stumbled across a website which listed typical characteristics of a female adults with ASD (with the big and necessary caveat that everyone with ASD is different). I thought I could show this to her and see what she thought about it.

We sat down and I told her about the conference, the research I’d done and showed her the website. She read through the page and gasped repeatedly, saying “Oh yes…that’s me!”, “Oh my word, that’s exactly it!”, and, “It’s like reading a story about me…”. She shook her head repeatedly – she couldn’t believe there were others out there who were just like her. I thought to myself that things may finally start to fit into place.

Over the past year my Mum and I have been on a journey. We’ve tried to talk to our family about ASD, my Mum’s been to GP’s, therapists and she’s tried to tell people in work. And even events that have happened in our past have taken on a completely different light. I wanted to write this blog so I could reach out to other adults and children who love, live with, work with, know or want to learn more about adults with ASD. It can be tricky to understand. Most of the literature online focuses on children with ASD and, obviously, this is so very important. But more awareness needs to be raised about adults who have lived their lives, sometimes very difficultly and frustratingly, with undiagnosed ASD. I’m not a health professional, just the daughter of an amazing woman who has struggled with, and is now embracing, ASD.

So. Why is my blog called ‘my other worldly mum’? I asked my Mum the other day how she felt at a social event she had to attend. She said “The best way I can describe it is like this. It was as though I was floating in my own bubble, whilst everyone else was part of another world.” She is my ‘other worldly’ Mum.

I hope you enjoy my blog and that it gives you comfort, awareness and reassurance in whatever way possible!

Hello world!

This is your very first post. Click the Edit link to modify or delete it, or start a new post. If you like, use this post to tell readers why you started this blog and what you plan to do with it.

Happy blogging!