Living and Coping with Autism following being diagnosed as an adult
Friday 24 July 2020
6:07 pm
Reading Time: 17 minutes
Living and Coping with Autism
Image Credit: Darryl Leja, NHGRI (National Human Genome Research Insitute)

This blog post is an updated and hopefully more educated version of a post I wrote on the original Aimless Wondering. When I initially discussed autism on the first version of this website in June 2017. I had some belief that I was on the spectrum; however, I had no formal diagnosis of autism to base my reasoning on or to support my situational behaviours. Following the difficulties I found in clinical Occupational Therapy placements discussed in my initial post on this blog, a year following this post, I decided to pursue a diagnosis, and I am grateful for my parents for their support in making that possible. I am also thankful, to the University of Derby’s Student Wellbeing unit, who fast-tracked my process.

By November 2018, I received the report from the previous month’s psychologist session, and it formally confirmed my diagnosis of being someone with high functioning autism. Despite this metaphorical weight taken off me, from not knowing but having some considerable awareness of myself. I still am not keen on the diagnosis to be this fixed label on my forehead. Even though I now do declare in documentation which requires that I have obtained this autism diagnosis, I do not wish for people to stigmatise me or others for the way we interact and perceive the world around ourselves. So if you are to comment on this post, please respect other voices. It is important to stress that this blog post is a personal reflection on the neurological condition. Autism is a broad spectrum disorder, and therefore, my take on it may not resonate with others who have received their diagnosis. Therefore I aim to broadly define autism before embedding my traits and findings from the assessment I took in the autumn of 2018. Along with my other blog posts, I aim to offer education, so I have also provided some useful resources on this post, providing you wish to begin understanding it further for yourself and or others.

So what actually is autism?

Autism is a broad term for a neurological condition which exhibits signs during childhood and adulthood and is generally characterised by difficulties in communication and relationships with other individuals when using language and abstract concepts. Aspberger’s Syndrome is a heightened disorder based upon being autistic. While there is no official “cure” for autism, scientists have explored continued to observe the psychology of the brain. Through extensive research, they have begun to see signs and developed more knowledge of what defines a person as autistic. With progressive scientific insight, those researching into autism are now able to find these common traits within the brain matter.

Extensive research also indicates that there is no clear causation for these traits either. However, scientists have found that genetic and environmental factors both contribute and it is important to stress that the upbringing of an individual does not cause autism and most importantly it is not the fault of the individual with the condition. With this tangible research and the use of more evidence-based interventions, these scientists have been to determine where an individual may lie on the spectrum. However, it is still very complicated, as each of us displays individual traits and characteristics. Therefore, there is no general aspect which can define a person from another. As we grow older, our biological makeup and acceptance of the environment around us change too. As mentioned earlier, autism is a lifetime disorder; therefore, it cannot be transmitted from person to person nor be something which will affect an individual for a period of their existence. The condition influences how a person will use their senses to make sense and attempt to interpret them. Despite this, the best way to cope with it is by celebrating an individual’s positives.

Along with autism, it is common that an individual might also have learning disabilities, mental health issues, along with other neurological conditions. The most common of these could be Attention Deficit Hyperactivity Disorder (ADHD), Down’s Syndrome, Dyslexia, Dyspraxia and Epilepsy. However, there are others. Many scientists believe that almost half of those people with an autistic diagnosis may have a learning disability. In comparison, a third of people with learning disabilities may have autism. Scientists also estimate that roughly 700,000 or 1% of the United Kingdom’s population are people with varying degrees of autism. Various studies, together with anecdotal evidence, suggest that there is a ratio of 3:1 when it comes to the gender balance with three males with autism to every one female. However, it is crucial to consider that there is no official register of those who have received an autism diagnosis. Therefore this data is from epidemiological studies and surveys.

How do those with autism view the world?

For those who have autism, the world can be considerably overwhelming. Therefore, it is likely that this causes significant levels of anxiety. Which, in turn, can make the processes of being social with others a real struggle. Even relationships with close family and friends can be affected by this anxiety. This anxiety can also be present by the individual with autism relates to their school or work life. As people with autism often do not “look” disabled, and this can cause barriers to communication with other people. It is common that other people intuitively know how to communicate and interact with each other.

However, it is prevalent that some people may struggle to build some level of rapport with those individuals with autism. There is considered likely to leave people with autism to wonder why they are “different” to other individuals. Also, it could create a feeling of being misunderstood and or not feeling appreciated by the other person. The characteristics and traits of autism are often very personal. Therefore they will differ from one individual to another, so it is not always clear at face value that an individual has autism. Despite this, for a person to receive a diagnosis, a person will be assessed as having had persistent difficulties with their social communication and social interaction with other individuals. The individual is also likely to have restricted and repetitive patterns of behaviours, activities or interests built upon since early childhood, and these traits affect to the extent that they “limit and impair everyday functioning” for the person.

My personal diagnosis

Following the disappointment of not being successful in my first attempt of clinical placement in Occupational Therapy, The visiting tutor who had come to visit me advised I should see the Student Wellbeing unit at the University of Derby. With no formal diagnosis, I was open to the elements of being sent anywhere without a personal support plan giving me any safety net. If I was to continue this route, I wanted reassurance that the anxiety I had developed was something worth documenting.

It was during one of my introductory sessions held on campus with a Student Wellbeing counsellor that I enquired about getting tested for Autism. During this session, I asked about how to go through the Autism diagnosis route which led me to fill in the Autism Spectrum Quotient (AQ50), and then self grade myself against Professor Simon Baron-Cohen’s renowned test. It did seem to give me some valuation that there might be something present as did another qualitative questionnaire known as the Ritvo Autism Aspberger Diagnostic Scale – Revisited (RAADS-R). Following these initial counselling sessions, my parents and I made the executive decision to get a diagnosis, and due to being a student at the University of Derby, I was able to get a quicker response than going through the National Health Service’s queues. This knowledge gave me some confidence.

After weeks of feeling disappointment and distress, due to the events which had unexpectedly unfolded and instructed by the counsellor, I saw in the summer to wait for an email inviting me to meet a senior clinical psychologist for a one-to-one session. I patiently waited for this next vital step. This activity would complete the next step in formally getting clarity on my behaviours and traits. Thankfully this email arrived early into the new academic semester. She met me at the University of Derby’s Student Wellbeing Centre on an Autumnal afternoon in October shortly after starting my new pursuit and course at the university. Knowing this gave me some reassurance in the environment of which I was to complete this assessment and meant that I did not have to visit somewhere which I did not feel safe or confident within and somewhere I could feel less overwhelmed.

Once I sat down within the private meeting room, and the psychologist introduced herself properly to me. She checked my welfare and began to tell me that she would be using a mix of structured and unstructured interviewing techniques along with an observation of my behaviour and developmental history to help form the diagnosis. She would also ensure all details of the conversation would remain confidential at my discretion and consideration. Therefore what I discussed with her would remain private unless I felt it was acceptable for others to be aware of or consider when attempting to reassure me.

Disclaimer: The remainder of this blog post highlights my interpretation of what she detailed in the report.

Social Interaction and Communication

The psychologist felt it was best to start at the beginning, so the first thing that I was encouraged to do was talk about was my childhood and development. My response was, mentioning my eyesight issues being recognised very early in life. The first time I wore glasses was at the tender age of roughly eighteen months old due to my parents, observing that I was not playing or feeling an affinity with the toys I had before that point. I have continued to do so ever since. Due to a complicated prescription, I shall likely continue to do so.

Following this brief discussion, the psychologist asked about my relationships with other children during my childhood. I discussed that I enjoyed an independent aspect of play rather than engaging with others. On top of that, I was a quiet child. Therefore I underwent Speech and Language Therapy at age seven as my speech was limited and reduced compared to my peers.

Both social communication and social interaction with other people are massive indications of autism within individuals. Individuals who have autism are very likely to struggle with interpreting another person’s language. Be it verbally or non-verbally. Therefore take things incredibly literally so different facial expressions, tone of voice and jokes can be difficult to use or be understood. People with autism may also struggle with their language skills and the ability to keep a cognitive connection.

Once my language skills had developed, the times I did speak fluently was on my interests – I still do this. However, I’m thankful I have developed a diverse range of topics to talk about, so it is less obvious; when I was a child, I would talk up Thomas the Tank Engine and football. Although both are still important to me, I have managed to delve into other areas. The advice given to build a rapport with an individual with autism is to speak clearly and consistently with allowing enough time for the speech to be processed.

Throughout life, I have never found it easy to form strong friendships; this was especially more true when I was younger as I did not have the confidence to interact with my classmates or do group activities. Some might deem this kind of behaviour as insensitive; however, it is and was because I find it difficult to “read” another person’s intentions. Therefore, I still spend many hours by myself rather than with family and or friends. I was grateful my parents recognised my limited interactions and put me in schools. These schools had small class sizes as I have always been quiet and had a strong feeling of being on the social periphery and therefore, did not actively join in with others. The advent of Social Media allowed me to start and maintain some of the long-lasting friendships I still have today. I have managed to develop connections with different individuals who were also seeking comfort from having an online presence rather than spending my free time in the local area with others within my age range.

However, one downside to making friends through the virtual domains has always been not able to spend quality time with those people regularly. Even before the COVID-19 pandemic due to friends living across the country or has a different lifestyle to mine. When spending time with another person, I like to have a purpose for the meeting and make sure that time spent together focused on a particular activity or activities, rather than doing things spontaneously. Typically, I will go with the flow of the other person’s suggestion if the circumstances change rather than fight my corner.

During the times, I have made friendships even to this day. I recognise that I have allowed myself to slip into an “agony aunt” type of role with that other individual. This subconsciously created role happens when I tend to listen more than respond. This role usually also sees me take time to build trust with the other person. It is highly likely that I will end up over empathising and over connecting with those I have befriended, which has had mixed responses. At times while being someone’s friend, I become highly sensitive and take on other people’s problems, perceiving it as a duty to help them. On the flip side of this, when I feel mentally tired, I appear more insensitive to the world around me.

My speech during this time becomes more stilted and prefer small intimate engagements to large social environments where my attention will focus on processing other’s conversation than contribute. Over time I have also found subtle emotions and banter more challenging to spot and understand, possibly reacting slower than others or feeling highly sensitive over the subject matter. However, as I have become older, I have steadily become more confident in not letting these things affect me as badly as they once did (although sometimes it is still challenging). It is indeed a known fact that people with autism take comments literally and cannot distinguish where the emotion lies.

Despite this, I believe I have developed a “thicker skin” when others may wish to tease me over small details. It was commonplace within my previous full-time work environment before attempting my university studies. My first role as a database clerk, along with being a subject of other people’s jokes based on my actions, quirks and or opinions was where I began to find more inner strength to deal with these metaphorical pokes. During which the first few years working there, I still found to be a challenge. However, I steadily gained more confidence in recognising this humour.

One reason I also felt that the clinical placement environment did not suit me was due to struggling with small talk. While on my second attempt at an Occupational Therapy placement taking place during July 2018, I took on the advice offered in my initial placement, I did attempt to do this. However, it did not come naturally. Therefore, I was prompted by those around me to do so rather than doing it of my own accord. I found this most challenging while keeping busy doing an activity such as observing and assisting with washing and dressing assessments.

It is also important to mention at this point that throughout my life, I have also generally found being watched and observed very overwhelming. This feeling has affected me while doing presentations or making public phone calls (either to friends or strangers) or even roleplaying – so telling me to mask my emotions is not going to solve my anxiety. I am under the impression that this form of distress had been a massive factor in my performance during the placements, which led me away from pursuing the vocation of Occupational Therapy. This trait’s impact was a real disappointment to me and those observing me as I could not explain why this was happening when I had the necessary knowledge to undertake the role adequately but could not handle the situation professionally. In addition to this noticeable anxiety, I have found maintaining eye contact with other people very exhausting. Many people who have autism report that they find continuing eye contact painful or stressful.

Fatigue and or feeling a heightened level of anxiety, as well as a self-perceived pressure, can make this appear a lot worse. This trait occurs as it is not a natural thing for me to mask and hide. When I was on placement, I struggled with this as I attempted to be accommodating to patients with others in the room. However, despite trying different coping strategies, it still was awkward for me. Therefore, I am attempting to improve this when in communication with other people. Although I may look away or not appear to be paying full attention, I am listening, and over time I have been trying to improve this when in communication with others.

I also know by talking to people, that if a particular subject or topic enthuses me, then my rapport has several traits commonly found in other people with high functioning autism. People with autism tend to be socially naive to the other person or people. Therefore, I have often have had comments from many that I usually communicate in a fashion which is verbose, pedantic and idiosyncratic, all while at a monotone pitch. Others may also notice, that my speech pattern will often incorporate gestures with my limbs which, coupled with my dyspraxia, can make me appear reasonably disjointed. Along with attempting to maintain and improve my eye contact made with others, I aim to enhance the perception of my speech pattern.

Flexibility of Thought

Many people with autism are often likely to report that they face difficulties thinking in abstract or imaginative ways. This trait can impact on the individual’s reaction to (subtle) changes in their situation or their circumstances. It can be challenging to manage for the individual. One way of combatting this is by creating an easy to maintain and personal routine or do repetitive behaviour at particular times of the day or night to combat this anxiety and emotional state to eliminate meltdowns, panic attacks and distress. Rather than doing something overly spontaneous. However, this might inversely mean the individual can think incredibly logically and methodically about how they will react and make a decision which affects their perspective of the situation or their circumstances. Despite the myths often spread, people with autism do not lack empathy or concern for others or appreciation of manners; however, just may deal with the situation in their way or method which feels comfortable for them. It is also prevalent to see individuals with autism place a lot of time and energy into their passions and interests. Sometimes this can be at the expense of other matters which others may not understand or value as highly.

It is because of this trait that I like to keep a reasonably organised mentality and have a determination to be useful to others. During the ill-fated academic year of studying Occupational Therapy, I maintained a proud responsibility in being a student representative to the cohort. Also, I mentioned in another reason post I am a partisan of the Green Party of England and Wales as I hold the values of equality, diversity and fairness important to my own identity. I will often regard myself as “headstrong” but, I will never impose my personal views upon others when I appreciate debate and discussion as well.

I also feel it is essential for me to be precise and have a plan in place. So much that I have become doubtful to take a risk as this uncertainty increases my anxiety. When I travel, I like to coordinate my plan in advance and should my ideas become changed or affected by external factors this can send me into a low mood and destabilises my enjoyment. Over time I have become somewhat stronger more resilient to these situations, but I do struggle to maintain positive and be able to brush it off as if it did not affect me.

I will admit that moving from a full-time job and living at home to university studies and living in halls of residence was a very anxious time for me. I had no idea of who or what I would encounter or my possessions in the communal kitchen would be respected. Thankfully over time, that anxiety reduced, and I found some solace in my environment. However, once I began placement found familiarising myself in another new setting and along with unpredictable new situations overwhelming and distressing. This trait is prevalent among those individuals with autism. I still have a great sense of anxiety when I go somewhere unfamiliar, so it often takes me time to acclimatise and focus in the new domain.

I believe there is undoubtedly a need for me to maintain some order and balance to my environment. Even if my own space can appear messy and untidy, I feel I can locate where things are. However, if items are moved around without my knowledge, then I can feel somewhat shaken. Ever since I was a child, I have been fascinated by lists and ordering of tangible items this could be from putting my model trains in a particular order or me collecting many assets of football memorabilia and putting them in date order.

Throughout life, I have also found writing and reading real experiences a lot easier than exploring fictional worlds and settings. However, studying BA (Hons) Writing and Publishing has opened my eyes to different creative styles of content which I possibly would have overlooked previously. Therefore I aim to look more into reading and writing fiction in due course as I feel this would benefit my understanding further.

I found it very difficult to play imaginatively with other children when I was younger. Therefore a lot of my imaginative play was done by myself this included pretending to interview football players and managers as part of my connection with my playing of the video game Championship Manager (which became Football Manager in 2004). My love of railways and station architecture has also been a long-standing interest and enjoy visiting different ones whenever I get the opportunity to do so as this gives me a comforting sensation.

Sensory Experience

People with autism are often highly sensitive to their environments. Therefore people with autism will report either over- and or under-sensitivity in some sensory domains. In other words, individuals are likely to have unique experiences and different sensory issues dependant on what is going on around them. These individuals could describe different experiences as overwhelming and distressing. Many would describe this as sensory “overload”. However, it is also entirely possible that some people might describe these sensations as “fascinations”, “soothing” or “strengths”. An individual with autism will feel many different senses affected. These include:

  • Sight
  • Sound
  • Smell
  • Taste
  • Touch
  • Balance
  • Proprioception

It is easy to overlook and ignore factors which make up our senses. None more so than our sight. My vision issues and my dyspraxia have made an impact on how I see the world around me and how I respond to the cues and signs which other people might easily pick up and receive. While studying Occupational Therapy, my halls of residence flat and room despite being in a good location for amenities finds itself situated very close to a busy road. This location would cause some stress for me. Therefore, I would attempt to shut myself away from this by pursuing other insular activities such as listening to audiobooks to avoid the sound and sight of traffic. I have always felt a closer affinity towards more serene green spaces (despite having childhood hay fever). Despite owning an array of coloured t-shirts, I find garish clothing very distracting. I am happier with dimmed or even natural light rather than having too much light. Despite having a skill of being a good proofreader (also as a child I would be able to pick out typographical errors in printed work) I occasionally may need but not necessarily ask for locating something that is outside of my standard field of view. I have always felt I was quite sensitive to sound, especially in situations where the background noise is overpowering. In those areas which I cannot control the volume, I feel very disconcerted and challenged when I am focusing on my activity or the other person or people I am spending time with as part of the experience.

I do not believe I have any heightened issues affecting my sense of smell. However, it might take me a few more moments to register the scent than someone else if it is a faint odour or essence. When it comes to my taste, I believe that I have a somewhat bland diet and can be a bit of a picky eater, as I have never been overly fond of spicy food. This over-sensation affects my determination to eat any cuisine which comes from parts of the world which use either spices or chilli—using these ingredients with the primary aim to increase the temperature of the food prepared. So I will not be found in curry houses, Chinese or Eastern cuisine restaurants; although I do enjoy the smells which come from these eateries.

While on the subject of taste, I have always found swallowing lumpy textures or medication challenging, even the smallest of tablets I simply cannot put on my tongue and take without needing to bite. Despite this, I will not refuse taking pills if they will help make me feel better. Thankfully I have not been put on any prescribed medication. However, despite now into adulthood, I still find this very difficult. This sensitivity can affect me when I am taking painkillers such as paracetamol. Or antihistamines to reduce my chances of being affected by high pollen or even taking an antacid to lower indigestion or an upset stomach. I am much happier about eating a lot of Italian food, be it predominately pasta or pizza. However, I do enjoy a varied diet. Some individuals with autism may prefer the same foods every day and expect them at the same time. Therefore I have always made sure I enjoyed something different at lunchtime to what I would eat later in the day.

As regards to touch and my sensation towards different textures, I can have a slight over-sensitivity towards wearing certain materials. I most noticed this when I was wearing a human-made material uniform for my Occupational Therapy placement attempts, not aided by the long dry summer months. I am more at home when wearing more breathable materials such as cotton and prefer my clothing to be slightly loose or baggy rather than tight-fitting. When I was in my previous employment, I wore a shirt and tie which meant that one of the first things I did shortly after returning home was get changed into something less formal as it would help me relax and feel more comfortable rather than remain in my office attire.

I also can have an over-sensitivity towards touching hot items or water. However, I do not tend to feel cooler atmospheric temperatures as readily as others; therefore, I am still comfortable to not require a coat or jacket in a lot lower temperatures than others may be.

Along with my connective condition of dyspraxia, I have always found difficulty with my balance and had a lower spatial awareness than most people. I know due to my dyspraxia and eyesight issues that I also have poor hand-eye coordination which means I spend more time focusing and considering my weight balance when moving. I will also continue to have great difficulty in descending steps or the terrain of the land. Occasionally I might even notice small bruises upon my limbs when I have not registered accidentally knocking into something. Despite having these challenges of clumsiness, I am either resolute that I will achieve the activity at my own pace or find a more suitable method of making it through the physical obstacle. I may also use repetitive movements to lower my anxiety and stress. Examples of this behaviour might include the re-tying of my shoelaces or pacing in a small confined spatial area.

Conclusion: My emotional well-being and mental health

My aim with this blog post and future endeavours are to create awareness and compassion for the neurological condition as I still feel it is still widely misunderstood, and many might deem it an excuse. I certainly think there are times when living with autism can have the sense that it is a curse; however, I believe it can also be a blessing. I am now feeling more confident in myself knowing that I have this diagnosis even if I do not wish to label myself heavily.

Leaving the Occupational Therapy cohort, which had felt very homely to me over the time spent studying it with a variety of talented individuals pursuing this vital vocational goal certainly knocked my confidence. However, I have no regrets giving it my best attempt. Since getting this diagnosis, I have attempted to be more mindful of my mental health. I have allowed myself to try to find some strategies and activities which give me self purpose and valuation. These may be new ventures or ones which I have found solace in before.

I am also more in tune with my emotions than ever before. I am also very thankful for the support offered by the University of Derby and those within my support network who accept my quirks. As my bid to regain confidence again is not a smooth linear path and I infrequently have the occasional slip where my anxiety or low mood gets the better of me which can feel very difficult to explain or illustrate. However, knowing that I do have high functioning autism which does not change my perception of this condition. I also do not wish there was a button to remove it from my personality.


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