The Right to Choose Our Own Words

There is this thing making the rounds in Autism WordPress blogs at the moment. It’s called The Autistic Bill Of Rights*. There is one point on there that comes up a lot.

IV. The Autistic Community holds the right to choose the language which pertains to them, and when language is chosen, it shall be respected by all.

This point reflects that some autistic people prefer person first language and some prefer identity first language.  Some people want to describe Autism as a disorder and others prefer condition. That’s fine, every autistic person has the right to choose their own language. But this is often closely followed by an expectation that the people around that autistic person use the same language and by people getting offended if the wrong language is used. And this I really don’t understand. The language we use reflects both how we understand language as well as our understanding of the world.

Some people may simply use which words sound right in that particular sentence. It may have absolutely nothing to do with the persons perception of Autism.

Some individuals might know several people with Autism who have different opinions on which is the right language to use. I imagine it would be quite hard to ensure that every time such an individual talks to one of the autistic people they know, they remember which person likes what and thus what language to use.

Some individuals might know someone with a different condition who has a preference for a particular type of language. They then may generalise that use of language to other conditions. That’s what people do, they generalise what they learn. Being able to generalise is part of what makes social situations easier for non autistic people.

Of course there will be some people who choose language that does reflect what they perceive autism to be. I think that’s perfectly fine. I would personally prefer that everyone always used language to reflect what they actually thought.

There are many reasons people use specific language and everyone has, to a reasonable degree, the right to use the language they want. If someone uses language you don’t like, first find out why they use that language. If it does reflect a perception you think is incorrect then by all means explain why you hold a different perception.

*So I only just found out that if you have a hyperlink to another person’s WordPress blog post, WordPress creates a Ping Back from that post to yours. That is a bit too much interconnectedness for me. Here is the URL for the Autistic Bill of Rights post. stimtheline.wordpress.com/2018/01/22/autistic-bill-of-rights-shareable-image

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Comparing Autism Spectrum Disorder and Deafness

I recently read a blog post entitled The Great Divide is an Illusion. The author makes a number of good points about how people at both ends of the Autism Spectrum have shared experiences and have the same disorder. Her opinion is that consequently people with Asperger’s (HFA, ASD level 1, whatever you want to call it) can provide useful insight into what someone with Classic Autism (ASD level 3 etc) is experiencing.

This is all well and good but then she makes the following comment.

If my child were deaf, that would be out of my experience. I could guess and imagine what’s going on with my kid, but until we’re good at signing to each other, I’m going to be somewhat in the dark. The best person who could explain to me what my child is experiencing would be a deaf adult who can read lips or write and communicate with me.

Out of context this seems fine but it is reflecting a comparison I see frequently on forums and blogs. That of comparing the Autism Spectrum to being Deaf. The thing is when people do this they are not usually comparing to the entire hearing impairment spectrum but to the severe end that requires sign language in order to be able to communicate. I strongly feel that if you going to compare the Autism Spectrum to another condition you should compare it to the entirety of that condition.

When people compare ASD only to the severe type of Deafness I find myself feeling that my mild (formerly moderate) hearing loss is being disregarded. This is particularly unpleasant when it comes from people who state that Asperger’s is just as significant as Classic Autism.

My mild hearing loss is significant and should be included when people are comparing ASD and Deafness. Lets assume that one did compare to the entire hearing impairment spectrum. If you had a profoundly deaf child would you ask an adult with a mild hearing loss what your child is experiencing. I somewhat doubt it. Consequently I left the following comment which is still, 2 weeks later, awaiting moderation.

I agree there are that lots of aspects of autism that are shared across the entire spectrum, for example sensory overload. Listening to the experiences of verbal people who have these traits can only help to increase understanding of what it is to experience an Autism Spectrum Disorder.

However there are also differences between the two ends of the spectrum that should be recognised. You have made the example of if you had a deaf child, the best person to understand how that child experiences the world is another deaf person. However would you think that a person with a partial hearing loss could completely understand how a deaf person experiences the world or vice versa. I have both Asperger’s and a hearing impairment but I cannot tell you what it is like to live in a world without sound any more than I could tell you what it is like to have the functional language and communication impairments seen in Classic Autism.

I’ve been trying to think of good way to end this post but I can’t think of one, so I’ll just leave it here.

Hidden Repetitive Behaviour

I have always engaged in some type of stimming behaviour but most people are unaware of this. This is because I have always known that many people, and my Mother in particular, consider such behaviours to be a sign of abnormality. Consequently for the most part I have tended to suppress stims or do only subtle ones in public.

On my own there are quite a few stims I have done; spinning or pacing in circles, shaking my head and occasionally rocking. Spinning was what I have done most of the time. When around other people I mostly only did small repetitive movements with my fingers, although I did fidget with my stationary quite a lot as well. I suspect most people if asked would have said that I didn’t engage in stereotyped behaviour.

Since being diagnosed I feel like I should at least be able to stim at home in front of my family. Unfortunately this seems to really irritate my Mother. I get a lot of comments like; “You never did that when you were little” or “You’re just trying to make yourself weird”.

What I find particularly irritating about this is there is one stimming behaviour that I have always done and my Mother is aware of; spinning or pacing in circles. My Mother has never told me that that is weird or that it is something I should stop doing. I think that this is because my Mum sees actions like rocking as being abnormal where as spinning in circles is something all kids do and I just kept doing it. This difference seems to be reflected in the lists of examples of stereotyped behaviour. Spinning in circles is often not mentioned, although commonly reported by people with autism. I suspect that a child whose only or primary stim is spinning in circles may have this behaviour dismissed as not being unusual.

There have also been some other activities that I do that are decidedly repetitive and can for me serve a similar function to stimming. In year six in Maths we did Trial and Error calculations (or Trial and Improvement for todays kids). This essentially involved finding the square root of numbers without using the square root button on a calculator. This is quite a repetitive activity and most kids find it terribly dull. I quite liked doing this and for years afterwards if I were bored or anxious and had a calculator to hand I would frequently start doing these calculations.

There are also a number of crafts that I have done over the years; bracelet making, knitting and origami. The thing about these crafts is that while one can keep doing something new every time, one can also be quite perseverative and repetitive with them. For example always making Sonobe modular origami models or knitting the same simple item again and again. It seems to me that if you are doing a craft or similar activity in this way then surely this should be just as significant a repetitive behaviour as any mentioned in the Autism diagnostic criteria.

The problem is that the criteria doesn’t give the underlying impairments and traits that give rise to repetitive behaviour, it only states the more common (in boys and/or more severely affected individuals) outward presentation of those underlying impairments and traits. There is also no acknowledgement of the effect of having good social awareness on the presentation of autism symptoms. This results in some individuals not being able to have their difficulties and differences recognised by professionals. If the full range of autism presentations are not understood by the professional community, how can we ever expect the average person to understand.

Maladaptive Daydreaming as a Special Interest

Ever since I can remember I have engaged in these periods of fantasizing while spinning or pacing in circles. There has always been an obsessive, preservative feel to these episodes. I feel like I need to do this and once I’ve started I can find it difficult to stop. There have been occasions where I have spent over 3 hours doing this, to the point that I have failed to eat.

After I was diagnosed with Asperger’s I wondered if this could be part of the repetitive and ritualised behaviour side of the autism spectrum, an autistic special interest. But I never saw anything that talked about this kind of activity. Mostly autistic special interests seem to centre around collecting things or information.

Recently I came across a concept that described my fantasy episodes perfectly, Maladaptive Daydreaming. This concept was defined in 2002 by an Israeli doctor, Professor Eli Somer. Somer’s initial research concerned a group of individuals who had suffered significant trauma and subsequently went on to engage in this type of daydreaming.

However after publishing this first paper received lots of letters regarding people who felt Maladaptive Daydreaming described them, many of whom had never suffered any trauma. This led to Somer conducting more research and last year he published another paper with proposed diagnostic criteria. Whether Maladaptive Daydreaming (or Daydreaming Disorder) becomes a validated diagnosis remains to be seen. Of particular interest though, is that the proposed criteria lists Autism Spectrum Disorders as an exclusionary condition. This would suggest that the symptom complex of Maladaptive Daydreaming can be considered a repetitive or ritualised behaviour.

Of additional interest is that in 2014 a group of researchers published a paper on a possible subtype of Stereotypic Movement Disorder, Intense Imagery Movements. Stereotypic Movement Disorder (SMD) also has Autism Spectrum Disorder as an exclusionary condition, unless the SMD symptoms cause significant impairment by themselves.

Hopefully as research in these areas goes on it will be more formally recognised that Autism can contain this kind of behaviour, though this will require letting go of the notion that people with Autism have impaired imaginations.

Subconscious Compensation in Autism

Compensation is a word that’s been used a lot in relation to Autism lately. In particular that this may be the reason many girls don’t get diagnosed. The compensation resulting in it appearing that girls don’t have symptoms that they do have.

But it seems that most of the time when people talk about compensation in Autism, they are talking about conscious compensation. For example actively planning interactions or analysing facial expressions.

Recently I have been thinking about compensation for a different reason. Compensation is the word used to describe the method by which a person recovers from the type of Vestibular Disorder I have. The idea is that repeated exposure to the problematic situations will help the brain learn to deal with the incorrect and conflicting sensory signals it is receiving. This will then result in a reduction of symptoms. This type of compensation is more subconscious. However it doesn’t fix the underlying impairment and symptoms will often still occur in situations that are particularly taxing or unfamiliar to the vestibular system.

I wonder how much of a role subconscious compensation plays in Autism. When I’m with people I know really well I communicate reasonably well and most of the time I am not actively thinking about how to have that communication. My social communication and interactions aren’t perfect, my Mum is constantly complaining about my tone of voice and my lack of consideration towards her. But they are generally successful without me constantly thinking about what I am saying or doing.

If subconscious compensation is a factor is Autism then it would cause an even greater barrier to diagnosis. This is because not only would the compensation mask symptoms but people aren’t aware they are doing it, so they wouldn’t be able to share it in an assessment.

The point at which this subconscious compensation fails is when something taxes the areas Autism affects, i.e. unfamiliar social situations or extreme sensory environments. It is at this point that you would be able to see the true disorder. With unfamiliar people, situations or conversational topics I do tend to start actively compensating. For example I plan out conversations and pay close attention to body posture. I also tend to completely fail at tone of voice and my sensory issues become more pronounced.

Some people might think that if the Autism doesn’t cause difficulties much of the time then it isn’t really a problem. But being able to deal with unfamiliar situations is really important. It is this that allows us to move forward with our lives, e.g. to apply for a different job or change our lifestyles. I hope that future studies into compensation in Autism will recognise both types and the differing ways they affect symptoms and diagnosis.

I don’t have Dyspraxia

Coordination difficulties are often noted as being highly co-morbid with Asperger’s Syndrome, with many people additionally diagnosed with Dyspraxia. This is one thing that does not apply to me at all. I always had really good coordination, particularly in fine motor skills. I taught myself to use a swing as a toddler, rode a bike easily and I love doing crafts like Origami and Friendship Bracelets.

It might seem like having really good coordination wouldn’t be a bad thing, but it can actually cause some issues. I have a vestibular disorder which has as one of its more visible symptoms, balance difficulties. Of course if you have high coordination abilities these will mask the balance problems. Much like with Autism Spectrum Disorders, there is a tendency to judge the severity of a Vestibular disorder by the level of the visible symptoms. This means that as I am not falling over or generally failing to walk people assume that my disorder is only a very mild problem.

There is also a social impact of having higher than average coordination abilities. There have been many times where I have moved around someone or moved something past some one. I know the situation is perfectly safe and I won’t knock them or harm them in any way, but they perceive that I am too close and have been inconsiderate and risked knocking them.

I sometimes wonder if I have some sort of Dyspraxia opposite. My theory here is further supported by the fact that while many individuals with poor coordination have low muscle tone (Hypotonia), I have unusually high muscle tone (Hypertonia). This means that I have poor flexibility and consequently have muscle pain a lot of the time.

If I could name this opposite profile it would be Hyperpraxia. Unfortunately this term is already in use to mean excessive activity. But whatever one calls it, it would be nice if this profile could also be recognised.

Hidden Anxiety

One of my more significant issues is that people don’t realise that I am spending every moment feeling some degree of anxiety.

I drew the below diagram to help explain why this is so much of a problem.

anxiety

Anxiety Levels Chart

The blue line is having zero anxiety and the red line is anxiety at a level that becomes visible to others.

Most people have anxiety levels like the green line. They do experience a little bit of anxiety from time to time and I’m sure that makes people feel bad and impacts their functioning. I am also sure that some people who are typically on the green line do spike into visible levels of anxiety occasionally.

My anxiety levels though are more like the orange line. It is there all of the time. Keeping that anxiety in check and ensuring that it doesn’t prevent me from interacting appropriately with people or go to the shops takes so much energy.

Unfortunately sometimes it spikes higher into a more visible state, often in response to something really trivial. To other people this looks like I’ve gone from no anxiety to lots of anxiety over something that typically doesn’t bother me, so they think I’m being pathetic.

The other problem is that because people don’t see that I am using all this energy to suppress the anxiety, I don’t have the energy to do all the things they think I should be doing. This tends to result in a perception that I am being lazy when what I am really doing is conserving energy for the things I need to do.

Vestibular Disorder

5 years ago when I was diagnosed with ASD I was relieved, I finally had an explanation for so many of the difficulties and differences I had experienced since early childhood. However as time past after my my diagnosis I started to feel that there were things that didn’t quite fit within the label of Autism.

I had sensory issues that only started during my attempt to do teacher training, increasing difficulties talking while walking and anxiety and dizziness that appeared for no reason. Then I started having a sensory symptom that was definitely not an Autistic one. At least I haven’t seen anyone with ASD referencing this symptom.

The symptom is called Oscillopsia. This is the illusion that your field of vision is oscillating. There are many disorders that can cause Oscillopsia from the relatively benign to severe degenerative illnesses. Additionally it can result from a problem in the Eyes, Brain or Inner Ear.

As well as experiencing this symptom I also had a couple of episodes where I almost fainted and then a bad episode of the ear pain I’ve had since I was about 20. All of this led me to return to the doctor to try to get some answers. To be honest what I really wanted was an explanation for the ear pain. Everything else was pretty mild or I was happy considering a consequence of Autism + Anxiety.

The GP was a bit irritating. Telling me I was looking for a magic pill and no such thing existed. Given all I wanted was a reasonable explanation I found this very annoying. However she did refer me to the Ear, Nose and Throat department to see a consultant.

When I saw the consultant I decided to add in some of the other symptoms that I’ve had thinking this might encourage some additional testing. Not surprisingly the consultant dismissed the ear pain informing that there was no otological cause for the pain. He did however suggest balance testing to see if the other symptoms were related to my ears.

This testing led to a diagnosis of Unilateral Vestibulopathy. I don’t know what caused this. Most people develop Unilateral Vestibulopathy subsequent to Vestibular Neuritis but I never had this. I did have Chronic Otitis Media as a child which could have caused damage to the vestibular system. I have have some very mild vestibular symptoms since childhood but that wouldn’t explain why I started having more significant symptoms in the last few years.

I was diagnosed with this vestibular disorder just over a year ago and since then the symptoms seem to be slowly worsening. The primary symptoms of Vestibulopathy are postural instability, unsteadiness and oscillopsia. However there are a great many other symptoms that can occur along with the primary symptoms. The Vestibular Disorder Association website has a comprehensive list of these symptoms.

Not surprisingly my increasing vestibular symptoms are compounding my autistic symptoms. In fact as I’ve learnt more about vestibular disorders I’ve realised there is a degree of overlap in the symptoms they produce, though I suspect the generally later onset of vestibular disorders results in a slightly different presentation of those symptoms. I plan to explain more about this overlap but not in this post as its already quite long enough.

New Old Posts

Shortly after I was diagnosed I decided to start writing about some the things I was thinking about with regards to Asperger’s. I called this blog Explaining my Asperger’s World. I wrote a few posts and then failed at continuing the endeavour.  A couple of years (or 3 possibly) later I  decided to try again. I wasn’t particularly keen on the original name so I came up with a different one and created a new blog. On this new blog I have managed to publish 2 posts and start about 30 drafts.

I’ve just decided to start a new blog about the things I like to make, Coding and Crafting. While setting this up I noticed there is a import/export feature in WordPress. Consequently I have decided to amalgamate the two blogs and import the posts from the old blog into this one. These posts are bit more things I was feeling and needed to express than the couple of posts I’ve written so far on Subtly Autistic.

Mild Autism Spectrum Disorder

I have noticed that many people seem to object to the use of the word mild in reference to Autism Spectrum Disorders. The phrase, “There’s no such thing as mild Autism (Asperger’s/ASD), you either have it or you don’t.”, in particular seems to be quite prevalent on many forums and comment sections.

This rejection of the existence of mild Autism seems totally illogical to me. Every single trait of autism can range from not present to mild to moderate to profound and every state in between. Every person on the planet will have a combination of these traits. For most people this combination will not result in an overall impairment. But for a significant proportion it will. How severe that level of impairment is, will by definition, vary from person to person, ranging from subclinical to profound.

I think the primary reason people don’t like the use of the word mild is that it may suggest a minimal degree of suffering or only a slight difficulty fulfilling the expectations of others. This is an understandable concern, but if we refuse to acknowledge the existence of mild Autism then we will never understand the ways in which it presents and the best help to offer.

In addition if we don’t fully understand the different ways Autism presents then it will be harder to diagnose and we will struggle to understand how it looks when compounded by another factor. As an aside, these compounding factors could make even subclinical autistic traits problematic so I do think there should be a way to diagnose subclinical Autism.

I also think the problems associated with the word mild are broader than just Autism. Many people think mild hearing loss is totally insignificant and fail to understand the difficulties it can cause. However to suggest that mild hearing loss does not exist, one is either Deaf or not would be ridiculous. A mild hearing loss requires a different approach to total Deafness, similarly mild Autism requires a different approach to profound Autism. Just in case any one is thinking that’s not the same, Autism can present  in different ways and you can be mild in some areas and severe in others. Hearing loss can also present in different ways, including some that are not detectable on standard hearing tests.

So in conclusion mild Autism exists and perhaps instead of objecting to people using the word mild, one should educate others on what it means.