Signs of autism in children

Signs of autism in young people

 When considering whether or not a child in your class is autistic, it is important that you take note of and record patterns over time in different areas of the child’s life, both at school and at home. All the potential signs in isolation can occur in children who are not autistic, it is only when enough of the signs occur together and over time that autism becomes a distinct possibility. It is important that you are in regular contact with the child’s parents because they may be able to add pieces of information that in conjunction with your observations help to form a complete picture of the child’s development.  Some children with autism, particularly girls, will not necessarily exhibit enough signs of autism at school because they may camouflage or hide some of their traits in order to blend into the background, or because they exhibit a more passive presentation of autism. For example, intense and repetitive interests may be present but you might not necessarily be aware of them in the school context, which is why checking in with parents is so important.

Remember that autism comes in many shapes and sizes and that all autistic children are different and will not struggle in all the potential areas all of the time. Autism is developmental, and this means that we change over time and in different settings. For example, we might struggle to make eye contact in some settings but not in others. Anxiety and the amount of sensory overload can all affect how the child presents. It is common for children to bottle up anxiety over the school day and release it at home because they feel safer at home and able to express their feelings more freely.  The autism academic Luke Beardon sums all of this up in the golden equation, which is autism plus environment equals outcome.

I will now guide you through some of the potential signs of autism that may be present in the children you support.  It is important to bear in mind the key autism criteria as they are written in the diagnostic manuals. The criteria are broken down into two main areas: social communication and social interaction, and repetitive and restrictive behaviour, which includes sensory differences and intense, highly focused interests.

I will draw upon some personal examples of these signs as they were mentioned in my Educational Psychology report, which drew upon an assessment I had at school when I was 9 and 10 years old. I was not diagnosed autistic until I was 21, but most of the key signs were present in the report, which was later used as just one piece of evidence for my autism diagnosis.

Starting with social communication and interaction.  There will usually be a pattern of social isolation that will be evident from early childhood. As mentioned in a previous slide, 75% of children who are later diagnosed autistic were observed as having social difficulties from the age of 5 if not earlier. As soon as I started reception class, the teacher noticed that I was not interacting with my peer group. The teacher intervened by getting two older girls to play with me at break times. As is common for many autistic children, I found it easier to play with children who were either much older or much younger than me. As my Educational Psychology report stated, ‘’there were some interaction difficulties, particularly with her peer group, preferring to play with much younger children’’. It is important to bear in mind that the child might not be consistently on their own all of the time, and may well try and interact with other children, but it is the quality of the interaction that is different, and the child will often experience social rejection because of their inappropriate social responses.  Look out for any children in your class who do not appear to have made any consistent friendships, particularly peer group friends. Conversely, the child might have just one friendship that they cling to obsessively, being unable to share the friend, resulting in regular conflict and the breakdown of the friendship.

The child might be very sensitive to rejection and not be able to understand why their friend wants to play with other children. For example, when I started secondary school, I made a friend on my first day, but could not share this friend with other children, and had no understanding of personal space, which meant that I followed her everywhere. The friend tried to introduce me to her other friends, but this made me feel anxious and very threatened. One day I saw my friend walking off arm in arm with another girl and I burst into tears. A teacher asked me what was wrong but I could not communicate my feelings and so the issue was not investigated. Problems communicating feelings and telling teachers what is troubling the child, can contribute to a delayed autism diagnosis, which is why it is so important that you play detective and don’t wait for the child to come to you.

Another sign can include misinterpreting conversations. A personal example of miscommunication occurred shortly after I started school. The class was told that there would soon be a fire alarm practice. I took the conversation literally and when the alarm went off, I believed that the school was burning down in flames and was no longer a safe place. The experience temporarily traumatised me, and I refused to enter the school building. Eventually, the teacher found out what was wrong, and explained what was happening in a way that I could understand.  Other potential autism signs can include taking offense easily, not being able to differentiate when they are being teased versus being bullied, and telling you they are fine even if they are really struggling.  And as mentioned in my psychology report, the child might take a long time to decode instructions.

The next key area is restrictive and repetitive behaviour. Some autistic children will exhibit stimming, also known as self -stimulatory behaviour, which can include behaviours such as rocking, constantly fidgeting, and not being able to sit still. However, not all autistic children will stim in an obvious manner, and some autistic children, particularly girls and those with a more passive presentation, will hide any stims when at school but might stim at home. For example, I did not stim in an obvious manner at school, but at home I regularly walked on my tip toes. Tip toe walking is very common in autistic children, so ask the child’s parents if any such behaviour is present at home, even if it is not obvious at school.

A reliance on strict routines and needing to do things in a particular order is very common in autism, but again, this may or may not be obvious at school. Some children will react in an explosive way to changes in schedule, but other children will appear not to react at all, hiding their anxiety and upset, which will only be released once they get home and feel safe enough to release their feelings. I never had meltdowns at school, and thrived on the routine and structure that school gave me. My parents brought me up in a very structured way, and we always ate our meals together at the same time every day, so I knew what to expect. They did not know I was autistic at the time, but the way I was brought up, with clear boundaries and a strong sense of routine, meant that I had a generally happy childhood despite my struggles at school. However, I would explosively meltdown at home whenever there was a slight change to routine, and because my parents did not know I was autistic, this resulted in a great deal of family stress. Having a diagnosis would have helped them understand what was going on, reducing family stress and helping me to develop coping strategies.

The next sign is differences in sensory processing.  The child might be very sensitive to noise, light, touch or smell. Certain self -stimulatory behaviours can also have a sensory function, for example the tip toe walking I mentioned earlier. When I am walking without shoes, I prefer to walk on tiptoes because the feeling of the ground against my bare feet can be unpleasant, giving me a tingly sensation. I also find it easier to balance when I am walking on my toes. Yet this issue for me is resolved when I wear thick shoes, and I can then walk in the typical manner, with my feet flat on the ground. 

Some autistic children might be hypo or under sensitive to sensory input and need a lot of stimulation in order to regulate themselves. These children will often enjoy heavy impact sport, PE and loud, boisterous activities. It is also common for children to be both hyper or hypo sensitive at the same time or in different contexts. For example, when I was a child, I loved running really fast, and could be very energetic and boisterous during break times at primary school, which often annoyed other children. However, I was very easily overwhelmed during PE and games, and difficulties with PE and group sports was highlighted in my Educational Psychology report as a cause for concern. The report said that my responses were very slow, and that I did not know which way to face or where I was on the court. The report also noted that I had severe spatial awareness difficulties.

The next common sign is highly focused interests or hobbies. As with many of the signs already mentioned, teachers may not necessarily be aware of the presence of highly focused interests at school. The stereotype of autism is that of a boy obsessed with trains, dinosaurs, computers or an eccentric hobby, who will talk at length in a monologue about his special interest. However, many children with autism will not be so obvious in their presentation, and their interests might be more mainstream. For example, when I was a child, my intense, all consuming interest was food and what children had to eat in their lunchbox. I memorised the contents of every child’s lunch box in my class, and would then relate this information to my parents in great detail. However, this extra piece in the jigsaw of autism signs was not noticed at school because I did not talk about my interests at school, but combined with the signs that teachers observed and that were flagged in my report, my intense interest in food would have completed the picture. As a teenager I became incredibly obsessed with the actress Kate Winslet and babies, both of which are fairly common interests for teenage girls, but it was the intensity and level of preoccupation that set my interests apart. Although I kept these interests hidden at school, I thought about nothing else, and at home I would talk about nothing other than Winslet and babies. I even followed people with babies down the high street while taking detailed notes in my baby spotting diary, and I would meltdown whenever I could not access my interests.

Intense interests and hyper focus can sometimes result in talents in very particular areas of development. However, it is common in autism for there to be a spiky or split profile, which means that the child can be both talented and extremely delayed at the same time, even in the same area.  For example, I learned how to read before I started school, and I was both hyperverbal and hyperlexic, which means that verbally I had a high IQ and I excelled at word recognition and recall. But alongside this peak in development, I really struggled to understand what I was reading. My reading age was 5 years ahead of my chronological age, but comprehension was almost 2 years below my chronological age, and this was flagged as a cause for concern in my report age 9.

There are other common signs that in conjunction with the key signs from the autism criteria already referred to, can provide vital information about the child’s development. Most autistic children will experience some degree of anxiety, and co-existing mental health problems are common. In my case, literal thinking and not understanding conversations contributed to the development of OCD, which began around the age of 7 and got particularly bad as a teenager, when I would avoid anyone with the slightest signs of a cold. At this age my life became incredibly limited, and I stopped travelling and going out. My educational psychology report mentioned my excessive hand washing, concerns around getting dirty, and that I seemed to lack confidence at times. Combined with the other signs, this should have been a potential autism red flag, but back in the 90s there was not as much autism awareness as there is today, and so I did not get the support I so badly needed.

Some children may exhibit low mood and refuse to go to school, but this is not the case for all autistic children. In my case, I generally loved attending primary school, particularly in the final years when we learnt about the human body and the ancient Greeks, areas of intense special interest. I was a happy child but also a very anxious child in need of support.

As already mentioned, meltdowns are common when there is a change of routine or sensory overload, but not all autistic children meltdown. Some autistic children instead shutdown, which means that they may look lost and in a world of their own, day dreamy and vacant. Shutdowns can be misinterpreted as wilful disobedience or laziness, but it’s important to bear in mind that a child in shutdown is not choosing not to engage, instead they can’t engage. The shutdown is a response to too much information, overwhelm and fatigue.

A sign that is often overlooked in autism is executive functioning.  Executive functioning involves the ability to plan, organise and prioritise tasks.  It can also affect time keeping, meaning that assignments might be handed in late. Poor executive functioning can mean that the child appears very disorganised. For example, my school report states that my ‘’organisational skills are very poor indeed’’ and that I put everything in one place.  Executive functioning can mean that the child is slow to get dressed for PE because of difficulties completing each step in the process, and problems with transitions. This difficulty was flagged as a cause for concern in my development at nursery school.

Do check in with parents to find out what is going on at home. Often the parents will take on the role of personal secretary, tidying the child’s school bag and keeping their files in order. At secondary school I had to go to the learning support unit each week where my bag and planner would be checked. Over time it appeared that my organisational skills were improving but what was actually happening was that my mum was sorting my school bag and planner for me every evening. Without my mum’s support, I would have struggled even more.

The child might also appear confused and ask a lot of clarifying questions, and might need a lot of reassurance. Conversely, they might struggle in silence and not put their hand up when they need help.

Motor difficulties and clumsiness are also common in autism, even if the child does not also qualify for a diagnosis of dyspraxia. I particularly struggled with fine motor skills, which made artwork difficult, and the occupational therapist found a borderline degree of motor skill impairment. It took me a long time to learn how to tie my shoelaces, and I struggled to coordinate my limbs during swimming.

Problems with directionality were also noted in my report, making it hard for me to initially find my way around secondary school, which made me very anxious.

Poor working memory is common, making it hard for the child to remember the steps in a process. This can result in co-existing conditions such as dyscalculia in my own case. Despite the stereotype, some autistic children, instead of excelling at maths, really struggle because of difficulties with working memory.

To conclude, the main points to take away from this presentation are that it’s important to take into account the full picture of a child’s development over time, not to get side-tracked by the presence or absence of isolated traits, but instead to focus on patterns via detailed observation and conversation with the child’s parents.

Friendship

Because of the verbal and non verbal communication difficulties that I explored earlier, making and maintaining friendships can be very difficult for autistic teenagers.

During adolescence it can become much harder for autistics to make friends because social interactions become much more complicated, and more based around the sharing of feelings and small talk as opposed to the rough and tumble action based games of childhood. I have always struggled on the friendship front, and did not make my first peer group friend until I was 9 years old. I often preferred to play with much younger kids because their style if play was easier to understand and they let me control the game. Conversely, it can also be easier to befriend adults or older kids because the older children often scaffold the interaction because of their greater social maturity, and can be more forgiving of social mishaps. It is the peer group interactions that are often most difficult for autistics to navigate.

I was very excited to make a friend on my first day of secondary school. I was at this age interested in making friends but I really struggled to understand the social rules behind friendship, and keeping a conversation going was very difficult. I just wanted one very close friend who would be exclusively mine, and I did not want to share this friend with other girls. The first few weeks seemed to go smoothly enough, and we went shopping and I visited her house for tea. But unbeknownst to me this friend was getting frustrated because I did not understand the concept of personal space. I followed her around everywhere, using her a bit like a safety crutch because I found it hard to navigate the school building on my own. She introduced me to her other friends, but this made me anxious because she was my friend and I worried the other girls would steal her from me. On the school residential trip, I saw this girl walking off with her other friend, and I burst into tears. I could not explain to the teacher why I was upset. Shortly after this the girl told me she did not want to be friends with me any more as I was too clingy.

The second attempt involved a girl in my class who mothered me. She voluntarily took me under her wing, and would often check if I was okay. Again, this friendship worked for a while, but the girl had a group of friends that did not accept me into the group, and I had no idea how to interact in groups, so I stayed on the periphery. Eventually I gave up trying to be her friend and isolated myself.

Finally a girl approached me one day as I stood all alone by the vending machines one lunch time. he said she wanted to be my best friend and she gave me handmade friendship cards. I took her on face value and did not realise that she might abandon me. I was invited to her house twice but I was very quiet because I did not know how to keep conversations going. Her mum phoned my mum up to say that I was very quiet – I had no idea how to use small talk. The next day, the girl told me she did not want to be friends anymore as I was too quiet and she liked girls who talked more.

After this last attempt at friendship, I gave up trying to make friends and I became increasingly introverted and anxious. I attended the lunchtime club at school, which was attended by socially isolated kids and those with learning needs. I made a friend there who was in the year below me, but it did not last because I struggled to maintain friendships. Eventually I spent lunchtimes all alone in an empty classroom or locked in a toilet. I stopped caring about making friends and was in any case head over heels in love with my idol the actress Kate Winslet, who I was totally obsessed with, so I fely happy despite my increasing anxiety, OCD, social exclusion and avoidance. However, this isolation and anxiety was storing up problems for later because I was not getting the help I needed. Without peer interactions, I was alone in the world and being alone for too long means you start to brood and over-think things, which can make OCD and anxiety worse. It would have helped me if school had checked up on me and helped me feel less isolated, or been in contact with my parents and worked out a way to help me with anxiety and friendship. I was in denial at this age though, and I refused to see a counsellor. The school should just have been more proactive in picking up on my social isolation. I was given a school record book with targets to interact more and attend the lunchtime club, but all the work was placed on my shoulders and the school did nothing active to help me interact and overcome anxiety. It’s important to sort out the issues early before they spiral, because social isolation can affect self esteem and adult outcomes.

Non verbal communication

Autistic people really struggle to interpret other people’s facial expressions, body language and tone of voice. Cues such as eye rolling, looking away to express boredom, a furrowed brow etc may not be registered or interpreted correctly. This has implications for behaviour because an autistic person who has not worked out that you are upset with them might not stop what they are doing. They are not trying to be naughty, they just lack the inbuilt natural connection to other minds that non autistics are born with.

Non verbal connections with other minds can be thought of as being similar to an internet connection, invisible wi-fi or interbrain. These non verbal forms of communication are unwritten and form part of the hidden curriculum that kids are not overtly taught because it is assumed that they do not need to be taught. It is important to understand, though, that while older autistics can read about the cues in a book or via explicit teaching, this does not mean that they can make sense of the cues in different, fast placed, real life social situations, so there are limits to trying to teach the unwritten rules.

Eye contact can be very hard for autistic people. This could be because the eyes are visually overloading, which means the autistic person can’t concentrate on what you are saying if they have to look at the eyes at the same time. I find it much easier to concentrate if I am not expected to focus on making eye contact. It’s important not to try and make an autistic make eye contact if they find this aversive, but instead give them ways to advocate for themselves so that they can explain to people that they struggle to make eye contact (or even to look at the face), but that they are still listening. Conversely other autistics might over compensate by making a lot of eye contact because they have been told to do so, but in either case, there can be difficulty making the amount of eye contact that is often expected.

Just as autistics can struggle to read your non verbal cues, so you might struggle to read their non verbal cues. Autistic people can find it hard to express their feelings on their face or in their voice, and they can struggle to know what they are feeling because of emotional blindness or alexythymia. For example, when I was at school, I was very anxious and tense because of my germ OCD and all the sensory and social information I had to process. But I appeared calm, and often smiled and looked well adjusted. Therefore, teachers did not notice that I was struggling with my mental health, so I did not get the support I needed. My parents noticed my OCD because of my excessive hand washing and reassurance seeking, but I denied I had any problems because of my difficulty understanding what I was going through. So it’s important not to rely on outward expressions as a guide to what is going on beneath the surface.

Poor non verbal communication can also impact the making and maintaining of friendships because of poor awareness of personal space, as I will talk about soon.

Verbal communication and autism

On first glance, you may not notice any difficulties in verbal communication among autistics who are highly verbal and can speak in complex sentences, often coming across as very articulate and verbally intelligent.

It is important to note that having a high verbal IQ is not the same thing as being good at verbal social communication. My verbal IQ as recently tested is very high, between 138 and 144, and this means that my social communication issues are masked beneath this high compensatory intelligence.

The difficulties exist on the pragmatic level, or the way in which language is used in a social context, and this is why it is the social aspect of communication that is affected, as opposed to the communication of non social information that might be intact. After all, I am communicating information right now, and am hopefully doing a good job of it, but imparting one way information is different to communicating reciprocally. Even someone who is highly verbal can experience significant difficulties with understanding figurative language, jokes , irony and verbal instructions.

These problems understanding verbal communication in a social context can affect how an autistic child learns in the classroom, potentially resulting in anxiety and learning difficulties.

To give a personal example of what this might look like, I developed severe anxiety and OCD as a teenager because I could not contextualise the information I was given in food technology about food safety and hygiene. The teacher told the class about the importance of cooking chicken thoroughly to avoid salmonella, and showed a graphic video about what happens if hygiene rules are not followed. I became incredibly anxious about handling raw meat, and I avoided eating meat and eggs for years. It would have benefited me if the teacher had explained to me in a detailed way how to cook chicken safely and reassured me that I would not catch salmonella. However I was not diagnosed autistic until age 21 and could not express my needs or what I needed help with, which is why it’s so important for teachers and other carers to be aware of autism and the possibility that a an autistic child might be in their class, so that they adapt material in an autism friendly manner. Adapting the material would mean that they check understanding, provide enough detail so that students are not left confused and anxious, and avoid the use of ambiguous or vague instructions.

Using clear verbal communication is especially relevant now with the Covid situation. It’s important to explain clearly what is going on, and to reassure your children that they are safe. It can be useful to write down the information and, depending on the child, use pictures or visual information because this can be easier to process than the spoken word. You might need to go over the information many times with the child, and it’s important to try and stay calm when talking to them about Covid because autistic kids can be very sensitive to emotional displays in other people, and they could pick up on your anxiety. Autistic teenagers are very vulnerable to developing mental health conditions such as OCD, and this can often start with poor communication and a black and white thinking style. They might think that everything is unsafe and dangerous, and this is a real and genuine fear. Do not belittle their fears or make them do things that cause extreme distress, but reassure them regularly with clear, unambiguous language. For example, some of my germ OCD developed when my class was told to wash their hands before lunch. I did not know how much to wash my hands, so I over compensated by washing them way too much. I also developed OCD around getting sick and catching disease off other people, which I still struggle with to this day. Being sick can be very scary because you are out of control and it’s unpredictable. We can’t totally avoid getting sick, but helping your child feel safe by explaining what will happen if they or their loved one gets sick can be helpful. You could write a social story for them where you write out what might happen in steps and what coping strategies they can use.

Verbal communication difficulties can make it hard for autistic kids to tell their parents or teacher about what is troubling them or if they feel anxious. They can find it hard to know exactly what they need or what might help them. I suffered in silence at school with extreme anxiety because I did not feel confident enough to talk to my teachers, and I was also in denial that I had a problem. So it’s important to check in with your child often and not expect them to tell you.

Problems with verbal communication can also impact reading comprehension, particularly when reading fiction, which can make English lessons difficult. As a child, I was tested by an Educational Psychologist because of my problems learning in the classroom, despite being otherwise intelligent. The assessment showed that my comprehension lagged significantly behind my verbal reading age, which was advanced. I could read very well but without always understanding the plot because of difficulties working out what was being communicated between the lines, or the non verbal information, as I will talk more about soon.

Autistic students very often struggle with processing speed, which means that it can take them a lot longer to understand or process spoken or even written information, and this processing lag can be more pronounced when there is a lot of sensory input. Low processing speed can make them appear slow, clumsy and disorganised, or less bright than they actually are. Teachers might be confused if a child appears advanced in some areas but at the same time struggles to carry out simple tasks or does not follow instructions, but the child is most likely overwhelmed and can’t keep up. It’s important to give such students more time and to not make assumptions based on how quickly they process information. Because of difficulties with processing speed, key information might be missed, resulting in confusion and anxiety. My processing speed, as recently tested, is severely impaired in contrast to my high verbal IQ, and this can affect learning and social communication. For example, I found it really hard to write down homework quickly enough at the end of the lesson. Teachers tried to help by writing it down for me, but this meant I had to wait in a line of other kids for my homework to be written up, making me stressed because I worried I would not get to the next lesson on time. It would have been better if teachers had given me the homework already written out at the start of the lesson, and they should also check the pupil’s understanding of what the homework requires.

Because of difficulties with processing speed, group work can be particularly difficult. Groups are noisy, and it can be hard for an autistic person to shift their attention as the conversation changes, resulting in confusion and missed dialogue. It can be hard to put thoughts into words when the environment is noisy and fast paced, so it can be all too easy for autistic pupils to be left out of groups. I hated group work at school, and I was often told by teachers that I needed to contribute more in groups. But I think it would be more inclusive if pupils who struggle with groups (regardless of autism diagnosis) are not put under pressure to perform in these environments. It could also help if they are given a clear role in the group so that they know exactly what is expected of them.

Difficulties with verbal communication can also make it hard to know what to talk about in social settings, and this can make it harder to form friendships. In particular, there can be difficulties with small talk. These difficulties are caused by problems picking up the ”common knowledge” that non autistics pick up via theory of mind, or the ability to work out what they are expected to say or not say in social situations. Because autistics struggle to understand mental states, it can be hard to access the common narrative pool that non autistics use to guide verbal social communication. I found it really hard to know what to say to my peers, but this difficulty can be masked in the classroom because the pupil might appear very quiet and well behaved. Girls in particular often mask or camouflage their difficulties by imitating their peers, which means that on the surface they can appear neurotypical. It’s important to note, though, that some boys also mask, and there are girls who don’t mask, so this is just a generalisation. Masking does not mean they are not struggling, it just means that they are spending a lot of time and effort trying to blend in via observation and mimicking, or learning via rote what non autistics do naturally, which is very exhausting. The teacher might therefore not notice the difficulty, if the pupil is polite and appearing to follow the more explicit social rules. It’s important therefore to be on the lookout for any student who does not appear to be fully integrating with their peers, who often sits quietly on their own, and who might appear confused as it’s possible that they might be autistic. I often put on the ”quiet, nice girl” persona, so I would often smile and speak softly, as I tried to emulate other well behaved girls in my class. But I could not get beyond the basic introductions in a conversation, and would be left feeling tense and unsure of what was happening next in a conversation because of difficulties navigating theory of mind. And this brings me on to the next aspect of communication, the non -verbal component.

Saturday the 26th September, 2020

Another day, another struggle!. I often say this to myself on waking. I wake up early today, some noise (a plane?) disturbed me mid dream, which is always the worst time to wake up. The dream was vivid as usual, bright and fully detailed, although only remnants of it are available to my late morning memory: something about drinking a glass of blood, and being in nature on a country road.

I fall asleep again and finally wake up at 7:30 am – quick, get out of bed, time is running out!!. I need to start reading at 8 am!. I will just have to accept that today reading won’t commence until 8:30 am, which is stressful. Stop taking life so seriously Anna, calm down, no need to rush!. Do I listen to my self talk? Only partly. I feel a bit frazzled. But I make my breakfast of stewed plums in a splash of orange juice, which I sprinkle with a high protein nut and seed granola my brother gave me for my birthday. I also consume two Ikea wholegrain sesame crispbreads spread with tahini and sliced banana, a glass of orange juice and the mandatory coffee.

I quickly wash up, brush my hair, do my teeth, get dressed, collect my book (currently finishing A Place For Everything by Anna Wilson, about her autistic mother), headphones, note paper, pen and white noise CD from my bedroom and set to work at the eating/food preparing/reading table in the kitchen. I make a second coffee, as is usual in my morning routine. Headphones on, white noise playing, I start to read, and I finish the book I started almost a week ago in about an hour. I decide to call it a day with my reading, as I’ve completed a book and need a break. I will start my new book tomorrow and will try and read for my usual two hours.

I turn on the internet and check my latest uploaded videos on you tube – I like to review them from time to time, as I’m a perfectionist. I then start to listen to the Thoughti Auti podcast by Asperger’s Growth you tube channel, which is really interesting, because I enjoy hearing from other autistics here in the UK.

Tiredness creeps in and I grab a third coffee (just about acceptable at 11:30 am) and a cheeky extra bowl of granola. Most days I settle for two mugs of coffee, but I feel particularly tired this morning. I’m now waiting for my dad to bring me my food shopping, as he does all my shopping for me at this time owing to Covid anxiety.

I will very shortly go for my 30-40 minute brisk walk, and it looks like a nice day: sunny and cool with a breeze, but the planes overhead are distracting and I’m very sensitive to their noise, which is not good for my already raised stress levels. I will go for my walk, put shopping away, wash hands over and over, then have lunch, go back on the computer where I will do hardly anything constructive for hours, before making my dinner: baked and stuffed pitta breads, a recipe from my Mediterranean cook book. Then I will start my bedtime routine: brush teeth, get changed into my pjs, watch you tube videos of other autistics, as I’m trying to work out my identity as an autistic person, and I greedily devour other autistic stories, which can result in negative comparisons while also being affirming at times. Talking about my evolving autistic identity will be the subject of another blog post sometime in the future!

At 9 pm if not earlier I will turn the computer off and get ready for bed. A very predictable life in a crazy Covid riddled world, same routine every day, feeling overloaded and frazzled every day, not being able to break out of my routine, but trying hard to do so, trying hard to break new ground because I feel I’m not achieving much compared to others, and I can’t help but feel stressed about that. Yet everything is so much effort for my brain, because I can’t put a bit of effort into something, I have to do a task with complete focus, and that’s exhausting. So I dither and procrastinate, then feel bad. Tomorrow will be the same. Meanwhile, the house gets dirty and dusty, I tell myself I will sort it out, but that rarely happens. I need support to clean the place, but Covid means I can’t currently access that support. In any case, right now it’s about mental survival and getting through the pandemic.

Dealing with change

I like my life to follow set patterns. I have to be in control, so external disruptions are perceived as threatening and immobilizing.  My issue with change is inextricably bound up with my over sensitive sensory system, difficulties directing my attention, difficulties making choices and initiating spontaneous action.

I like to be captain of my own ship with minimal interference from the outside world. Changes that I orchestrate, after a great deal of analysis and rumination, are tolerable. Indeed, when variety is connected with my special interest (collecting new books or trying new recipes), I experience positive energy and excitement. But when other people or society disrupt my life, particularly when the change directly threatens the details of my daily routine or an obsessive interest, I can become very confused and upset. If the change is reasonable and I know exactly what is happening and why, if I have a lot of time to process the change, and if the change is not directly threatening a key area of meaning in my life, I can manage and move forward with the change. But if a key area of meaning is threatened (what I refer to as sacred areas in my life), I am left totally bereft and this can trigger a destructive meltdown and significant ongoing tension.

The coronavirus/covid 19 pandemic was largely a change that I could process because 1) it did not happen overnight, so I had time to process the change, 2) I knew exactly why the subsequent changes to society were happening, and my logical priority was to stay safe, the need to do this being stronger than the anxiety connected with some minor changes to my routine, and 3) the sacred areas of meaning in my life were largely left unchanged.  With regard to the latter point, this means  my lifestyle was not that disrupted by Covid. The main change in my lifestyle was the alteration in support that I receive from the autism charity, because I no longer could see my support worker face to face, and had to speak to her on the telephone instead. However, this was my choice, not imposed on me, and the logical reason for this was because I did not want to risk catching the disease. In most other areas I could continue as before, eating and sleeping at set times, and following my sacred morning reading and cooking routines. Another change is that I can no longer go inside shops to do my food shopping because of the extreme stress this would cause me, owing to my OCD around disease. My dad currently does my shopping for me. However, although it is frustrating that I now have less control over what food I buy, and food is a sacred part of my life, in other respects the change has been positive because shopping was always a stressful activity in terms of dealing with people and the effort involved in going out, which could feel like preparing for a marathon at times. Even for someone who generally hates change, not all change is negative. Positive change is either something I have chosen to make my life better or more interesting, or a change that is there for a logical reason and has a compensatory positive element with it, as with the shopping example.

The hardest part of dealing with Covid as an autistic person is the uncertainty over the future, and when the disease will be under control. I have no idea when life will go back to normal, and I am not sure how I will cope when the danger has passed. If anything, ending a routine is harder than starting a new one, because I can get fixated on new patterns, even once they outlive their purpose. However, I am getting frustrated with the status quo because it feels claustrophobic being bound up indoors all day  – I do go out for a 40 minute walk, but I’m limited to a certain safe area. On one respect I am less over stimulated than before because I’m not being exposed to so much sensory information. But on the other hand I feel that I am becoming even more sensitive to noise and other little changes because of the stress and frustration associated with the uncertainty. I have less coping strategies at my disposal. For example, in the past I might go to the Library for a change of scene (an example of a positive, self chosen change), because it was a quiet environment filled with books, which are a sacred object. Or I might window shop up town, which gave me sensory feedback in a good way, because I’ve discovered that although I’m mostly hypersensitive, I do crave some sensory input as well at times, as long as I am in control and the option of leaving is available to me. Currently I can’t access these coping strategies, and this is frustrating because I do enjoy some self-chosen novelty, and I do have an energetic, adventurous side, although this is heavily repressed beneath my inhibiting anxiety.

However, despite the difficulties, my reading and cooking routines are helping me deal with the big change caused by Covid. My routines help me cope when the world outside is falling apart, although recently they have become increasingly compulsive, as they are the one coping strategy I currently have at my disposal. I have been collecting an enormous variety of books because the amassing of these sacred objects makes me feel more grounded.

I am finding the limbo land as lockdown is eased particularly hard. Society is opening up again, yet the disease is still out there, and people are still wearing masks and other disease references are everywhere, which triggers my OCD. It is easier for me to carry on in my own personal lockdown, the lesser of two evils in terms of anxiety because the rules are clear, but it is hard when the rules around me, in society, have been relaxed. There is no longer a sense of clarity or uniformity of purpose.

I often feel, recently, that I’m constantly in a state of high tension, on hyper alert, and a sense of feeling trapped and cornered by the pandemic. But I am still dealing with this huge, big change far better than I deal with little changes that directly threaten my sacred areas of meaning, particularly if they happen with no warning. An example of this would be if I were reading a book and there was a sudden noise, of uncertain duration. If I can no longer pursue my reading, combined with the sensory pain, my default reaction is some sort of meltdown, involving destruction to my self or objects around me. Now thankfully these days this is rare, but the threat of such a change is a constant source of anxiety. My routines must  operate like clockwork. I find it very hard to think of alternatives if my chosen course of sacred action is hindered. Now to some extent this depends on the type of change. When I used to go food shopping and had written down a shopping list, I would allow for the possibility they would not have what I wanted by writing a plan B or even C. I could therefore avert anxiety. But I am less prepared for sudden changes from outside to my sacred reading routine. I have to read  in the morning, unless another sacred part of my routine, such as the regular appointments I receive to help with my autism, has been planned in advance. I still find it difficult when I have an appointment at the time I am normally reading, but the fact I have had time to prepare helps me process the alteration. Now you might be thinking, surely if the reading is disrupted, you could just watch a film or go out instead. I know these are alternatives to my reading that I can enjoy. However, the option of doing these alternatives is not available to me at the time I’ve planned to read. It feels wrong to do them during my reading routine. This is part of the reason why I get stressed going to bed, in case I don’t sleep and am too tired to read. I know logically that if I’m too tired, I could just not read and watch a film instead. But this feels incredibly dangerous and scary, because it makes me feel out of control. I worry in case my reading routine will be ruined forever. I am aware I have a tendency to catastrophize, or to think that a bad situation like tiredness will be there for ever and ever. It’s strange; when I sleep well I never think that this situation will be the new status quo, because I’m expecting to be tired again soon. But when I’m tired, I can’t pull myself out of thinking that all control has been lost and I might not ever function again. When I’m wide awake, I also feel stressed because it’s a fluctuation in how I feel, and I anticipate losing the feeling and becoming tired again the next day. It’s too good to last!. It’s like my brain is geared  toward the negative over the positive, as I’m always expecting bad things to happen.

The fear of being powerless and losing control for ever and ever, of losing sleep for ever and ever, haunts me every day. I spend a lot of time procrastinating because it’s so hard shifting my attention, but once my attention has been shifted (like turning a rusty gear) , it can hyper focus, as it is doing now!. However, any noise disrupts the focus. Part of the reason why I procrastinate is because of the effort involved in maintaining attention, particularly on non sacred parts of my routine. This is why the afternoons are hardest, a void between my sacred reading routine and my sacred dinner routine. The options are endless: do I write, watch a film, read newspaper articles online etc. Because making a choice is so hard, as well as  initiating action and focusing attention on one thing at the expense of another, I tend to spend at least an hour doing nothing other than gormlessly scrolling through twitter.

So to conclude, I need things to be predictable and under control because making choices is incredibly difficult, my attention is so easily distracted by sensory input,  and my energy system is so easily depleted by the demands of the world.

Covid 19 from an autistic woman’s perspective

I have OCD, which in my case means I have a pervasive fear of catching disease. Before the pandemic, I worried about catching colds and tummy bugs. I tried my hardest to challenge these thoughts  through logic , and managed  to get out and about reasonably often: I walked to Waitrose to buy food twice a week, saw my support worker twice a week, when we would get the bus to a local gardens or walk to Home sense and Sainsburys. If someone coughed or sneezed, I would get triggering thoughts ( ”are they infectious?”, ”will I catch it”?), that would trigger avoidance and a temporary increase in tension and nervousness.

A pandemic is surely a person with OCD’s worst nightmare, and when I first heard the news back in January, as I was eating my dinner with radio 4 on in the background, I had to immediately turn off the radio as soon as the news  stated that ”reports are coming out from China of a new virus” . I  reasoned to myself that ”what you don’t know can’t hurt you”, and I carried on living much as I normally do until the end of February. I even went on a supported trip to Southampton at the time when cases in the UK were rapidly increasing. I did not know much about the virus at this stage, but I had heard through the grapevine that it was mostly mild, and this reassured me. I used to be an obsessive follower of the news, but it ended up increasing my anxiety and OCD, so I then went the opposite extreme, and chose ignorance over knowledge. But eventually I could no longer ignore the seriousness of the situation, as I heard people talking about it in shops. This sounded serious, and maybe I needed to find out about it to ensure that I was not putting myself at needless risk. So a couple of weeks prior to lockdown I started to research Covid 19. I read the statistics, which reassured me to some extent. I am reasonably young (at 32), and am not in any risk category. On the graph, my risk of death and serious illness is very low. Because I am obsessive, I read and re-read articles about corona, which served to reduce my anxiety, but also to make me more nervous when reports increasingly came through of young healthy people dying or getting severely ill. I am now past the point where not reading the news is helpful, and Covid-19 has turned into a micro special interest (the science behind the virus is incredibly fascinating!).

We are now in lockdown, and I can no longer go inside food shops. My dad buys food for me. I feel guilty about this because he is 72 years old and has asthma, and I really worry that he will get sick. I told him about online shopping, but he is a creature of habit and insists on visiting the shop once a week. I feel that I should be the one doing the shopping because I am young and healthy, and I would do this if I did not have OCD. But OCD is a brain problem, a physical block that means you would rather starve than go into a shop at this time. I’m thankful my dad can do the shopping for me, and I’m really concerned about what I will do if he gets sick and can no longer shop for me (I have been somewhat hoarding canned beans and fish, pasta, rice and frozen goods in case I have to live off this food). I have also been searching Amazon grocery for the cheaper food supplies (still expensive by normal standards) that I might need to rely on in an emergency.

However, apart from not being able to do my own shopping, I have been dealing with the situation reasonably well. I follow a strict routine ( as I always do!). I get up every day at more or less the same time. I usually wake up slightly before or at 7 am, but then lie in bed for around 30 minutes because it takes a lot of effort to get up, particularly with so much stress in the air. But I will be out of bed usually no later than 7:45 am to have my breakfast, brush teeth and hair, and wash face etc. I then get dressed and aim to get out for a morning walk between 8:45 and 9:15, which has become a new part of my daily routine since corona. I always walk for 30 minutes around the same residential area. This walk is very anxiety provoking because just getting outside at the moment triggers my OCD. I have to get out because I want to stay physically healthy. Although I have a reasonably sized back garden, nothing compares to a brisk walk in terms of physical and mental  replenishment. So I grin and bear it, and walk very briskly, often having to run if people emerge from houses, often crossing the road, and remaining very vigilant. This means I can’t relax while walking, but I feel good once I have got back home. My daily walk is a sign that I am not letting my OCD completely take over my life. I religiously adhere to the 6 feet rule, and I am quite good at using my logic to counteract intrusive thoughts (my autism ironically makes my OCD less severe than it might have been if I was not autistic!). For example, I get intrusive thoughts if a jogger runs past on the opposite side of the road (particularly if I can hear them huffing and puffing), but I logically know that any virus would be dispersed in the air, and would be very unlikely to infect me at such a distance. In terms of hand washing, I am washing my hands more often, but then so are most people!. I am logical in my washing, though, because I am not washing my hands all the time, and I am not washing them for much longer than what the Government recommends.

After the walk, I will read a book for about 2 hours. This was my routine before the pandemic, so not much has changed. I still have my lunch at the same time (around 11:30-1 pm, give or take), and will then go on the internet until dinner between 5:30 and 7 pm. After I have washed up I will watch you tube videos to unwind (usually of other autistics talking about their lives, which I find very interesting). I currently go to bed at 9:45 pm because I need a lot of sleep. I forgot to mention earlier that one improvement in my life since the pandemic is that I am now fully settled in my new home, next door to my dad’s. The pandemic motivated me to start sleeping and spending all my time at my new home, because I wanted to avoid contact with all people (including family) due to my OCD virus fears. However, this has been positive too because it means  that, although in some respects life is more unpredictable and chaotic, in other respects my life is more ordered and in control because I get to go to bed exactly when I want, without being disturbed.

One way I am getting through the current situation is reminding myself that all pandemics come to an end. The current situation will not last forever. Either a vaccine will come out and bring the end point forward, or the pandemic will naturally die out. And even before this happens (in my estimates, it will probably be some time in 2021), the current situation will improve. I expect that my OCD will not improve until the pandemic is declared over or there is a vaccine, but I know that every day brings us closer to the end.

Humour and comedy is also important (whoever said autistics are not capable of laughter?). Corona joke memes can be hilarious, particularly the ones about toilet paper and hand washing. Self deprecating humour can be a great stress relief, and where there’s laughter there is a way (it’s also good for the immune system).

Being hyper logical and very unemotional (almost Spock like in some respects) has also come to my aid. I am surprisingly stoical in crisis situations. I’m very matter of fact and intellectual about difficult situations, once I am forced to accept that this is what is happening. I see no gain to be had in being in floods of tears or being self destructive. I worry endlessly, but I also get on with my routines because routines are my life and keep me grounded. Even when the world is falling down around me, if I have my routines, I can survive.

Because I am an introvert as well as being autistic, I can go days and weeks without seeing a human face and not feel lonely. Therefore, social distancing itself is not too difficult for me to manage.  The internet and social media means that I can still feel connected without needing to actually see anyone. The hardest part of the whole crisis for me is the cancellation of activities I was really looking forward to, not knowing how long it will last, and the fear of catching the disease itself.

My synaesthesia however has  come to my aid. I can literally see the months of the year spanning out colourfully before me. This can make time appear condensed, as well as lending order and a concrete coherence to otherwise chaotic reality. So I can see into next year, I can see time flowing past, and this means I can use time as my healer: the pandemic will pass, each day is progression. Each day also  brings more knowledge about this fascinating disease.

Here are some interesting Covid -19 facts:

  • It is a corona virus, one of many, but different to the other corona viruses we are familiar with  because it originated in animals (bats). Corona means crown in Latin. The protein spikes on the surface of the viral ball resemble the spikes in a crown!
  •  Bats hardly ever get infections. They have super strong immune systems, arguably because they have such a high metabolism to enable flight (they are the only mammal that flies!). Because they generate so much heat, this puts their body under immense stress, so  they evolved to be very efficient at keeping themselves healthy. But they play the role of hosts to many viruses. These viruses can then infect other animals that do become sick.
  •  An intermediary animal is needed in order for a virus to make the leap into humans. It is speculated that a pangolin may have been involved. A bat infected a pangolin, the virus then mutated (known as antigenic shift) , enabling it to infect a human host (known as patient 0), who launched the current pandemic.
  •   Unfortunately wet markets (where pangolins are traded for meat) and intensive farming (that reduces biodiversity by herding thousands of individuals together) increases the risk of viral mutations and pandemic disease. The question is, will humans ever learn?

Autism, is it really one thing?

I struggle quite badly with my autism.  On a surface level, this is not automatically apparent because I can camouflage my difficulty through appearing calm and socially acceptable. In structured one to one settings, I can put on a good social front. Yet my understanding of relationships, how to relate to others on an emotional level, is virtually non existent. I really struggle to navigate the world outside of my very tight routines and self imposed schedules. I get so irritated about this because I want to be productive, to achieve, and I resent the fact I can’t work. Even voluntary work can be a struggle at times, although I try and seek it out in moments of energy. A lot of the time, though, I procrastinate. The effort involved in just filling out a volunteer application form is too much, too onerous, when I’d rather read or follow my usual habitual routines. I get stuck in my ways, as I’m very rigid. My brain finds it excruciatingly difficult to concentrate on anything outside of my interests or source of motivation at a particular time, which is nearly always a narrow suite of activities : cooking, reading, writing up recipes.

I have just one friend, who I hardly ever see, and no one other than my family and closest support networks to help me in times of need. I can’t navigate unstructured social encounters because it hurts my brain to do all the expected social moves, and I have little social motivation outside of my established  support or interest networks.

I have achieved a University degree, over 10 years ago, and I have no idea how I managed that. But I was less tired back then, I had less to think about, as my parents cooked for me, washed my clothes, organised my files etc, and I spent all day every day holed up in my bedroom, in my bed, studying intensively for hours at a time, complete mono focus on my area of study, History. I was fresh out of school and the routine was not too dissimilar to being in 6th form.  The University was a 20 minute walk from my house, as I could not handle halls. My life is quite different now, and as a fully fledged adult, I  have far more activities I have to perform, because my parents no longer cook for me or wash my clothes. These activities consume a lot of thinking space, although cooking is also an area of total obsession and interest. But it means I have very little mental space for anything outside of my routines.

My sensory issue around noise has increased with age, and in general I feel a lot more over stimulated and on edge than I did ten years ago. Alternatively I am just more aware of my sensory issues than I was back then, as I’ve always been easily distracted by external noise, but used to not dwell on it so much. With awareness comes fear, and my sensitivity has turned into an anticipatory phobia. I worry about noise even when it’s quiet, because I am more aware now of how much noise affects my ability to concentrate on tasks.

I have also become more aware of how severely autism affects my life. I cannot relate to people who supposedly have autism yet are married with children, have full working lives and are not really that disabled. Part of this might be to do with my own inability to understand other perspectives.  I have not moved out of the egocentric stage of reverting everything back to myself. I wish I could understand it more, as it would resolve a lot of anxiety, but I don’t get how I have the same condition as someone who can achieve things that I find so impossible. I also, though, genuinely think that autism is not one condition, and they need to separate disabling autism from non disabling autism. It affects my self esteem quite negatively to read and hear about people with autism who have achieved the trappings of normal life, and are well integrated into their communities.

It is possible that autism is also now being over diagnosed. On the one hand, it’s good that people are being understood and supported, and over diagnosis is better than intolerance and a denial of difficulty. Yet severe disability caused by the autistic syndrome is, and always will be, rarer than the milder shadow autistic syndromes that blend into normality. The latter may well cause real difficulty and stress, but if someone can integrate into society, it means their brain is less severely impacted on an executive level at least than someone who can’t, or can only do so with a lot of support. Being able to form deep relationships presupposes social motivation and drive, as well as at least some ability to reciprocate long enough to make the thing work. It requires putting yourself second, something that many more impacted autistics cannot manage. The more impacted autistics are being left behind because of a sea of super able identity first autistics, who lead practically normal lives, with kids, relationships, and/or jobs. I am not at all denying their struggles and disability, but there is disability and then there is Disability, and the latter entails not even being able to develop a friendship beyond an egocentric kid level. Autistics with greater impairment are being drowned out, not helped by speculations about people being a bit autistic, despite having very successful lives. Some balance is needed. Diagnosis needs greater refinement. Autism is not one condition, it’s a family resemblance condition. The conditions might share surface similarities and traits, but have massively different outcomes and  degrees of integration and type of brain impairment.

We currently have a one size fits all diagnosis that is dominated by the most able ”Asperger’s” type autistics, many of whom are just slightly eccentric geeks, who blend into normality. Mental health problems among this population are profound, as even very mild social impediments can cause difficulty. But this is not quite the same condition as the one that makes someone a virtual recluse, with the egocentricity of a child, and very limited ability to access the outside world.