Autism and challenging behaviour: Part 1

baby hedgehog

This is the first of a series of blog posts on a topic that will be familiar to many in the autism community – ‘challenging behaviour’.  Certainly as an autistic person, a carer to autistic people and a friend to many others I have gained lots of experience in this area.  I plan to cover conceptualisations and definitions of challenging behaviour and how these definitions have changed over the years, how communication can be a factor and how our conceptualisations impact our responses to the behaviour.

Challenging behaviour is a term that generally gets reserved for individuals who are part of disempowered populations (e.g. autistic people or people with learning disabilities). I do not think this is fair as often the so-called challenging behaviour has been preceded by some behaviour from the carers or service provider that is equally challenging to the autistic individual.  I therefore will (in a later post) propose a new definition of ‘challenging behaviour’ which will incorporate the behaviour of the service providers.

 

Prevalence of challenging behaviour amongst autistic people

Apparently challenging behaviours are common amongst people who are autistic.  There is a wealth of research that concludes this, however I am cautious of the prevalence figures I read.  Here’s an example of why caution is needed: Matson, Wilkins and Macken (2009) reported that up to 94% (!!!) of children with autism display at least one challenging behaviour.  In their study they use a scale called ‘Autism Spectrum Disorder – Behaviour problems for children’.  It includes items such as repeated and unusual vocalisations or body movements, or unusual play with objects.  If you define challenging behaviour as behaviours that are ‘unusual’ then of course you would expect a high prevalence rate in autistic people. We are a minority neurotype and our behaviour often seems unusual to NT observers but that alone is not enough reason to describe it as challenging in my view. This is just one example of researchers making judgements about autistic people from their (usually) NT perspective, there are many other similar studies. Definitions of challenging behaviour vary widely and most are flawed.

Another reason why prevalence figures about autism and challenging behaviour are extremely unreliable is because we don’t know who all the autistic people are.  Any stats where you see ‘x% of autistic people’ need to be taken with a pinch (huge bag?) of salt.  Those of us who know we are autistic are a pretty biased sample of autistic people.  We are more likely to be white males for a start, if we are female we probably got diagnosed late in life as I did.  Anyway, I digress. Back to challenging behaviour…

Despite me being critical of much of the research on prevalence of challenging behaviour amongst autistic populations, it is logical that there would be more than there is amongst the non-autistic population. Challenging behaviour is related to stress (Gerland, 2013, Milton 2016).  It is very stressful to be autistic in a society that has developed to suit the non-autistic population.  Stress amongst autistic people is likely to be for different reasons and the frequency and intensity is different which makes it difficult for a non-autistic person to empathise. As an autistic person myself, I have an almost constant underlying level of stress, probably from sensory overload and all the extra processing my brain is doing so something that may seem trivial to an observer can be enough for me to meltdown or snap.  Plenty of non-autistic people reach this tipping point too, perhaps not as often, but because other NTs usually can empathise with the reasons for their stress they don’t attract the label of challenging.

My next post is going to be about the label ‘challenging behaviour’ and how its use has changed over the years.

 

References

Gerland, G. (2013). Secrets to Success for Professionals in the Autism Field: An Insider’s Guide to Understanding the Autism Spectrum, the Environment and Your Role. Jessica Kingsley Publishers.

Matson, J. L., Wilkins, J., & Macken, J. (2009). The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1), 29-44.

Milton, D. (2016) 10 rules for ensuring people with learning disabilities and those who are on the autism spectrum develop ‘challenging behaviour’: …And maybe what to do about it. United Kingdom: Pavilion Publishing and Media

Trust

As a parent I know what it is like to unconditionally love another human being. I can’t imagine any love stronger than that between parent and child. The feeling of responsibility when they are small and dependent can be overwhelming, yet the rewards make it all worth it.  As a parent I see my job as ensuring my children have the best chance of reaching their potential. Their long term happiness is the ultimate goal. I need to be certain they are safe and happy.  That is a duty my husband and I accepted when we decided to bring two lives into this world.

At some point though most parents hand over some of this responsibility to other people, perhaps nursery carers, school teachers, babysitters or grandparents. Most parents do it, they are glad of a break and they trust that their kids are happy and safe. Many kids love being in their environments away from their parents. It is a lot for parents to try and raise children all on their own with no support, even when there are two parents.

Imagine a situation where your child cries each morning before nursery. Or they start to hide under the table before school. Imagine hearing worrying talk about ‘enemies’ and ‘attacking’. Noticing signs of anxiety (for them) like rocking, spinning in the playground at school drop off time. Sometimes the child might be able to talk quite specificly about the problem: ‘I don’t like lunchtimes mummy, because the teachers make me go outside and I don’t like wearing my coat. Please can I go to a different school mummy? Do all schools make you wear your coat mummy?’. As a parent you go into school or nursery and sort out the individual problems. Sometimes school will do as you ask, perhaps your child is allowed to stay inside on lunchtimes. Sometimes they disagree with you, ‘but she’s so happy, she’s always the first one to put her coat on and run outside to play’. (That’s what happens when you teach compliance. If she says to her mum her coat bothers her, perhaps just believe it, she has no reason to lie). But at the end of the day sorting out individual problems is not enough. You have to trust that the people who are caring for your child, who are sharing responsibility for your child’s safety and happiness will make good decisions in your absence.

In some cases as problems arise over a period of time, you start to realise that the people who have temporary responsibility for your child’s wellbeing are actually not up to the job. Your trust was misplaced. I am writing about kind, caring people, but it is possible to be well meaning but not have the knowledge or the time to keep an individual child safe and happy. Perhaps the majority of the children in the class are doing ok but for the parent of children who aren’t part of that majority, that fact is unimportant.

For parents of autistic children I have seen situations like this many times. The trust completely breaks down. I don’t just refer to school or nursery settings either. My daughter once said to me that a family member who was babysitting called my son a ‘stupid boy’ when he was upset about going to school. Similar derogatory terms have been used by others who we trusted.

For me trust in this context is not about believing that people will care for my child in exactly the same way that I would. Perhaps they use different strategies, that may be fine. Trust isn’t even about believing the person/people will always tell me the truth. I have recently come to realise that sometimes people intentionally deceive me but they are still worthy of my trust. What is important is being able to trust that the people have the same end goal as you and they have the ability to achieve it. Being well meaning but incompetent is not good enough. Competence but with a goal that completely misaligns with mine is also not acceptable.

In terms of school, I don’t believe their goals are aligned with mine. I don’t consider sitting still at a table to work as important (lying on the floor with the dog beside you works better in our house), wearing the correct uniform (even if it hurts you), participating in all activities even if you hate them and they are stressful. Most of those goals are about trying to maintain order which is important if you want to teach 30 children at once.  These goals do not align with mine.

I do believe the teachers we have worked with, care about my child’s safety and happiness but they don’t seem able to spot when there are problems.  They have such little knowledge of autism, they mistake signs of anxiety as behavioural problems. So in that respect I don’t trust them to respond appropriately.

So what do you do when the trust breaks down?  You have to weigh up the damage being done by the people who are supposed to be helping and consider if the benefits are worth it.

In our case it isn’t worth it. School has done a lot of damage to confidence, self esteem, mental health.  The number of people we ask for help with looking after our children becomes smaller and smaller.  There are only three people who I trust to look after both of my children outside of the house (my husband and I are two of them!). I have a babysitter who comes to the house to help me but I plan very carefully when she comes and what she does.

The truth is most people have no clue about autism. Worse than no clue. Many have quite firm ideas, but they’ve got it all wrong. This makes them dangerous. We get used to the eye rolls, the comments and judgements. As time passes we see the progress our children are making. It’s not fair that we are doing it all on our own, but if we don’t trust anybody else to do a good enough job what choice do we have?

Autism in the media

What’s the first thing one does when one becomes aware of autism in the family?  I went online, I read books, I watched TV shows.  In my view, this can cause unnecessary upset when it comes to autism.  I have seen very few articles in mainstream media that give a balanced view of autism. Here’s an example:

Click here for an unbalanced article about the experience of children with autism, written by authors who have no experience of an autistic childhood and didn’t feel the need to consult with those who do

 

‘How does a child experience autism?’

If I wanted to know what it felt like to snowboard in the alps would I want the opinion of someone who had never done it? If I wanted to know how women experience being women would I be interested in the opinions of a man? Of course not. Yet in the article linked above, there are no opinions from an autistic child or (it appears) from any autistic adults.

It is possible the authors of the article are autistic.  They have ‘two children on the autism spectrum’ so it is certainly possible (likely?) that at least one of the authors is autistic. If that is the case I would love to have read about their own autistic childhood.  I prefer to read autistic people writing about their own experiences rather than attempting to speak for us all as though we are a homogenous group.

 

What is autism?

No one could write a paragraph adequately answering this question as there is so much still to learn about autism. The description of autism in this article includes a lot of clichés. Autism frequently gets described as a spectrum which to me is too linear.  It makes me think of a line of autistic people ordered from ‘low functioning’ to ‘high functioning’.  Humans are more complicated than that.  Our ability to function is dependent on many different things and will vary throughout our lives and even throughout each day. We don’t describe non autistic people as on a spectrum, that would be equally illogical.

I could also comment on the use of person first language (perhaps a future blog post), describing autism as a disability (already blogged on this here).  But what about describing us as different? I’d love to hear the views of other autistic people on this.  I am quite happy with that term but only if the non autistic person who describes me in this way understands that they are also different.  They are different from me. There is no one correct neurotype.

 

Autism facts

The statistics presented are not facts! The media like to simplify data and I understand why, but this can be harmful.  The data are useful and can help inform priorities for services and future research. Please don’t describe them as facts though.  These figures can obviously only be based on children who have been identified as autistic. I wasn’t identified as autistic as a child and I am an example of an autistic person who wasn’t bullied and wasn’t excluded from school. I believe this data to be biased and overly negative compared to reality.  You are more likely to be identified as autistic when you are struggling and therefore come to the attention of teachers.  It is unavoidable as we can’t know facts, whilst we don’t know who all the autistic people are, but the media ought to include caveats and inform people of limitations of research.  They have a responsibility to do that in my opinion.

 

Problems with social communication and interaction

Young people on the autistic spectrum live in a world that is difficult for others to understand, and one which has difficulty understanding their needs. They can have problems with social communication and interaction, which may result in low self-esteem and confidence. Socialising in groups can be difficult, so time away from school is often spent alone. That’s why the ski club is so important to the boys and girls at Kaimes

The above quote from the article demonstrates how autistic people so often are considered the ones with the problem.  I don’t think we have more problems with communication than non autistic people. Communication is two way! Why is non autistic communication considered superior to autistic communication?  When I misunderstand others it is frequently because they didn’t say what they actually meant?  Why is that my fault?

For me socialising in groups can be difficult and I do like my alone time.  But I would add that many non autistic people appear to have difficulties spending time alone. Many people need others around to keep them entertained.  Maybe we should help them improve their ‘alone time’ skills?  They could benefit greatly from this.

For me, it’s about personal choice.  I love that there is a ski club so that autistic children who want to socialise get an extra opportunity, but it’s absolutely fine to prefer time alone.

 

Difference between boys and girls

I enjoy seeing so much about female autism in the media but this article as with many others over simplifies.  It assumes gender is binary. It also doesn’t acknowledge that there are other children, not just girls, who are good at ‘masking’ and ‘fitting in’ thus at risk of slipping under the radar with potentially serious consequences.  As with the rest of the article this section is very medicalised with talk of ‘symptoms’, ‘diagnosis’ and functioning levels.

 

Eddie’s day

At first glance the section called Eddie’s day appears as though we could be about to get some insight from an autistic person.  But no, the contributions are from the neurotypical people around him.  I am not going to comment further than that even though I have a lot of opinions on this section.

 

Advice on how to support us

This is perhaps the worst section of them all.  As well as being patronising, with ableist language, it completely over generalises. This is what they have to say about slower brain processing:

That doesn’t mean you should talk slowly or over-pronounce- they are not stupid! Using a calm, reassuring tone of voice and smile can lower anxiety.

Thanks for the suggestion of smiling at us, just in case it gets forgotten that autistic people are humans who are equally deserving recipients of good manners.

The writers have assumed the reader is not autistic throughout.  Just like much of the autism research I read, this article is another example of ‘us and them’.  An article written about us, without our input, for the benefit of people who have to associate with  us.

 

 

 

 

 

 

Autism research

lake-louise

 

I love learning about autism at the moment.  I can spend many hours relaxing reading blogs, books and research.  Occasionally though, I find my special interest can be a source of irritation rather than relaxation. So today I am blogging because I want a bit of a moan.

I try and get to as many conferences as possible and have seen some excellent speakers talking about autism.  At my most recent one, I heard a researcher speak about the work they are doing to engage the autism community and how feedback from autistic people had enabled them to make many positive changes to their research design.  There is obviously progress, if the involvement of the autism community is sought where it wasn’t before. I don’t think this engagement goes far enough though.

‘Researchers’ and ‘the community’

Frequently, the speaker referred to ‘researchers’ and ‘the community’ but it seemed to be assumed that they are two mutually exclusive groups. The talk seemed very much ‘us and them’ as though autistic people were there to be studied, but not to study. I commented on the fact that autistic people carrying out the research would be an improvement and was told ‘it is hard to find autistic people who are able’. Given how we are disadvantaged both at school and in higher education I am sure it is difficult, but let’s look at this statement in more detail:

Firstly, earlier in the talk there was mention of how the environment was made more autism friendly so that ‘the community’ could come to their offices to be engaged. Flourescent lights turned off, annoying buzzy microphones not used etc. But if researchers need to make changes to their workplace in order to make it accessible to ‘the community’ then that is quite telling. It suggests their everyday workplace is not an accessible environment and so many autistic people may be prevented from getting jobs as researchers. Making workplaces accessible is a work in progress, I know that.  But you would think a place that is researching autism would be ahead of the game.  If there were a real belief that autistic people are best placed to research autism, surely more would be done to enable this.

Secondly, if existing researchers say publicly that it’s hard to find autistic people who are able enough to become researchers, then that’s going to reduce the likelihood of a) an autistic person believing themselves capable of this achievement and b) disclosure of autism by any autistic person applying for a research post.  It sends out a pretty clear message to any one applying for a job – the employer believes non autistic people are more able than autistic people.

My view is that problems with how we identify autistic people (or often don’t) also contribute to difficulties finding researchers who are openly autistic. I believe there are some autistic people who don’t require any support. Some of us have learned to get by, perhaps at great cost to our mental health. I suspect, it is often the more intellectually able who have been able to do this.  Seeing as being a researcher is intellectually challenging, we are talking about the people who may be most suited to becoming researchers.  This group of intelligent autistic people are often precluded from a diagnosis as they have become so competent at copying the behaviour of non autistic people.  Many people have complete faith in the diagnostic criteria and believe you can’t be autistic unless a medical professional can see it.  So ironically, the years of research by primarily non autistic people have resulted in diagnostic criteria which may not be appropriate for recognising the autistic people who may make the best researchers.  Without that recognition these autistic people may never pay much attention to autism as a field.  There is no doubt my interest in the field has been sparked as a direct result of realising my family and I are autistic.

Representative samples

There is another point I would like to make about the representativeness not only of the autistic people you are using in your sample, but also the autistic people you are engaging whilst designing the study.  This particular researcher was confident that in one particular area, the sample was representative of autistic people.  I would like to say here (as there was no opportunity at the talk) that if you are researching autism, it is in my humble opinion, never possible to say that you have a representative sample. We don’t know who all the autistic people are and I believe the diagnostic criteria are biased.  It is based mostly on research done on males for a start, and some say that females present differently.  So one can say one’s sample is representative of people with an autism diagnosis but I do not believe people with an autism diagnosis are reprentative of the autistic population.

Anyway, I am glad to get that off my chest.  It would be so good to be able to have a proper debate about these issues with those who are doing the research. In the absence of that opportunity, blogging will have to suffice.  Please comment if you have any opinions on the matter.

 

 

A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

The Misadventures of Mama Pineapple

[Trigger warning: mental illness]

Dear Parent/Carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that this little person might be a little…different. ‘Autism’ is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you…

View original post 1,017 more words

Executive function

If someone asked me what I find most challenging about being autistic, I would say my executive function impairments.

Every area of our daily life is affected by executive functioning.  It is something that most people take for granted and it is only when it’s impaired that we start to become aware of its importance.

Executive functioning is an umbrella term for a number of cognitive processes such as working memory, planning, flexibility of thought, organisation, impulse control, initiating and monitoring actions.  Executive functioning impairments are well documented in research literature for children but as with most areas of autism research when you start to look at adults the literature becomes more scant. Those of us who engage with the online autistic community however, will be well aware that autistic adults often struggle in this area too.

For a detailed blog series about executive functioning see the blog musingsofanaspie.com.

In my case, I have noticed more problems since I started a family.  Those of us who have kids at school will understand exactly what I mean. So many small jobs that you need to deal with. E.g. pay £1 for this, £2 for that. Remember violin on this day, PE kit on another day. Not to mention the kids social lives.  Even my autistic children have busier social lives than me. I now have to manage three diaries not just my own, (four actually, as I organise a lot of my husband’s non work engagements).

Has my executive functioning got worse or is it just the increasing demands on me now I’m a mother?  Most likely it is the latter.  The situation has become a vicious circle.  I gradually was getting more and more stressed. Stress affects executive functioning, which then means I make more mistakes, which in turn leads to more stress.  Eventually the stress becomes intolerable and that is when my anxiety symptoms return.

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The photo above is a good example of how my executive functioning problems manifest.  Yes, that is 20 pints of milk in my fridge and yes we are only a family of four.  I have similar amounts of diet coke in my other fridge, yet I have no fresh bread. Shopping is challenging for me (I have physical impairments as well as my cognitive ones).  I have strategies which mitigate these problems to some extent, including a huge freezer which has meat, fruit, veg and bread so we will never go hungry. However the extra work involved in compensating for these cognitive impairments is, in my opinion, one reason why so many autistic people are anxious. Long term stress can lead to eventual mental health problems.

Interestingly, I find work much less stressful than home life. Partly because in my previous job I used to focus on only one project at a time.  It is the multi-tasking that comes with parenting that is my greatest challenge.

 

Today’s example

As I have been writing this post, a reminder came up on my phone for a doctor’s appointment. My heart sank as I have promised the children a day in the house (after a busy day out yesterday) and they do not like last minute changes to plans.  I had forgotten what the appointment is for, so I called the doctor to see if they knew. As luck would have it the appointment isn’t until tomorrow.  If we look at this situation, there are three mistakes…

  1. Started by putting the appointment in calendar on the wrong day
  2. Promised children a day in without having tomorrow’s activities in my memory (despite frequent calendar checking)
  3. Forgot why I had booked the appointment

Luck meant that mistake number three meant I didn’t get the kids out of bed, drive them to the doctors only to find out I was there a day early.

I make many errors like this every single day and the result can be wasted hours driving to places I don’t need to be, or worse not going to places where I do need to be.  That is why executive function is the part of autism that causes me the most problems. It can affect my reputation, when I make mistakes at work. It inconveniences family and friends (e.g. when I stand them up).  But I’d say it is the number of mistakes rather than the outcome of them that is most trying.  Some of my social encounters (particularly when socialising with people who aren’t autistic) can hurt me more, but those misunderstandings happen less frequently.

So for everyone else out there with a similar brain to mine, you are not alone.  I think I will write a post about the strategies I use in the future. I will add it to my long list of potential future blog posts.

Curing autism

Yesterday I saw a comment on twitter about the language used in autism communities.  A parent compared the term autistic child to cancer child.  They said that we should say child with autism.  This was later followed by this excellent post which I have made my first reblog.

The medical view of autism is what is generally represented in the media. Humans have a bad history of pathologising anything that doesn’t fit perceived normality.  I love to see autistic adults giving the alternative point of view.

Can we talk about a cure? There’s a real problem when it comes to Autism, and it’s not to be found in us autistics. It’s to be found in the focus of funding. Time and time again I see people struggling to get diagnosed, and then struggling when there is so little real […]

via Curing Autism — Autism and expectations