Asperger’s Still Exists

I see a lot of people online pointing out that Asperger’s no longer exists since the DSM-5 chucked it out. Some of these people even seem irritated that others continue to use the term.

The ICD-11 like the DSM-5 has replaced the category of Pervasive Developmental Disorder with Autism Spectrum Disorder. Unlike the DSM-5 there are several subtypes. The first one is “Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language”. If you look at the page for this subtype you will see that Asperger’s Syndrome is listed as a narrower term for this autism subtype.

If given this you still want to say that Asperger’s doesn’t exist, then by the same logic you would have to say that Dyslexia and Dyspraxia no longer exist as these labels are also in the ICD-11 only as narrower terms for “Developmental learning disorder with impairment in reading” and “Developmental motor coordination disorder” respectively. Curiously Dysgraphia is listed as a synonym and not a narrower term for “Developmental learning disorder with impairment in written expression”.  This lack of consistency concerns me as it suggests that could be other areas where language hasn’t been applied quite appropriately.

The Autism subtypes have really long names that are awkward to say so no one would use them in everyday conversion. Consequently I will continue to use the term Asperger’s Syndrome because I think distinguishing between Autistic people who have at least average intelligence and intact language skills and those that don’t. These two groups have different needs and different expectations placed on them and so we need an easy way to talk about these different groups. I also think we should distinguish between Autistic people who have gifted level intellectual and/or language abilities and those who don’t but that is topic for another post.

On an additional note Childhood Disintegrative Disorder also still exists under the ICD-11. Though I am concerned by its particular placement in the hierarchy of Autism subtypes. This is an example of ignoring the potential impact of giftedness on the presentation of a disorder. I would think it possible that if a gifted child experienced Childhood Disintegrative Disorder their intellectual and/or language abilities might not go low enough to be in the impaired range and so they might not belong in the Autism subtype that CDD sits under.

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Autism: Condition or Disorder

There is an increasing tendency to refer to being Autistic as having Autism Spectrum Condition (ASC) rather than Autism Spectrum Disorder (ASD). The thought process here being that some people are not disabled by Autism and that their Autism is simply a different way of existing. I wonder if perhaps we need both concepts.

Autism Spectrum Condition could refer to the state of having an autistic pattern of traits regardless of whether those traits have a positive or negative (or neutral) impact on the person. The label of Autism Spectrum Disorder would be applied only to those individuals who have negatively impacting traits in all domains of Autism.

A person who has ASC but is only negatively impacted by social communication traits could be given the label of Social Communication Disorder secondary to ASC. Similarly a person only negatively impacted by their stereotypical behaviours could be given the label of Stereotypic Movement Disorder secondary to ASC. For a system like this to work, I think concepts like Executive Function Disorder and Sensory Processing Disorder would need to be properly defined and actually appear in diagnostic manuals.

Not every autistic trait impairs a person’s functioning and some can even help to ameliorate the traits that do impair functioning. Only having the single broad diagnosis of Autism Spectrum Disorder requires us to pathologize every trait and consequently the only traits that seem to count towards a diagnosis are those that are obviously atypical and impairing.

I also think that by distinguishing ASC from ASD would make it easier to acknowledge individuals who are impaired by the combination of ASC and an additional factor such as a hearing loss but may not have been by the ASC alone. Of course this would also require the acknowledgement that people can have Autism Spectrum Disorder (or the symptom complex of ASD if you prefer) due to a combination of developmental and acquired factors., but I think this a topic for a different post.

People are varied and complex, as is Autism, and the idea that the only meaningful population split is to have one group with a significant number of pathological and impairing autistic traits and one group without seems frankly ridiculous.

Dissociated Intelligence

I have been paying close attention to the Neurodevelopmental disorders section of the ICD-11 Beta draft. I am mostly paying attention to Autism Spectrum Disorder but as the other disorders can overlap or be comorbid with ASD I am keeping my eye on those to.

I have just noticed that the Disorders of Intellectual Development section contains a new diagnosis, Dissociated Intelligence. There is not currently any description associated with this label so I googled the term. I found only one reference to this term in a book on Down Syndrome on Google Books.

This book defines Dissociated Intelligence as where there is a difference of at least 1 standard deviation between IQ areas and references it as having the ICD-10 code F74. Searching for this code shows that it is a part of the German modification of the ICD-10. I assume this means that it was never available as a diagnosis in the UK.

However if it is in the the ICD-11 Beta Draft then I also assume that it will soon be an available diagnosis. This is of interest to me as when my IQ was assessed as part of my Asperger’s assessment I tested as having a full scale IQ of 136 but my subtest scores ranged from average to the highest score possible. I have been very aware of this discrepancy since long before I was assessed and have attempted to explain to people why it can be a problem but no one ever understands.

When one part of brain is going at one speed and another part is going at a different speed, these parts don’t work well together. It would be like if the wheels on one side of the car are going twice as fast as the other wheels. The car is just going to get stuck going in circles and it doesn’t matter what the actual speed of the wheels is, the car will still get stuck.

Many tasks, particularly those at higher intellectual levels, contain different activities requiring the use of different skills. To successfully complete these tasks you have to integrate all the different activities together. For a person whose skill levels vary significantly this integration takes so much more effort and time. Very often people like this will need help to break tasks down into individual activities and may need someone else to do the final integration. It would be nice if the presence of Dissociated Intelligence in the ICD-11 means this developmental difference is going to be more recognised.

I suspect though that this label, if used at all, will primarily be used for those individuals whose Full Scale IQ falls bellow average but not low enough for a diagnosis of Intellectual Disability and who have some skills that do fall in the bottom 2% of the population. In particular I think it is extremely unlikely that this label will be given to individuals with a gifted Full Scale IQ. This is because society as a whole seems to be very resistant to the notion that Gifted individuals may have significant difficulties borne out of their atypical intellectual development.

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

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 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.