“Fussy With Food”

One comment I hear a lot in relation to people with autistic spectrum conditions is that they are “fussy eaters” or “fussy with food”. Certainly, a lot of people on all levels of the autistic spectrum do have limited diets but I have an issue with terming them as “fussy eaters”. Maybe it’s just my Aspergers causing me to take language literally but, to me, “fussy eater” implies that there is an element of choice. I know that some people think that limited diets in autism is all about control and I have known cases where this could be said but the majority of issues with food, from my experience and from discussions on autism forums about diets, are with texture rather than taste.

I know that almost everyone has a couple of foods that they cannot bear the texture of, not just people with autism. However, what differs is the ability to tolerate these textures. Somebody without any autistic spectrum condition may despise the texture of something but be able to control their reaction to it whereas I have literally had to run, gagging, to the nearest toilet before to spit the offending food out. Other people with autism will simply regurgitate the food back onto their plate. For me, I can love the taste of something but not be able to tolerate the texture. An example is kiwi fruit. I absolutely love the taste of kiwi but I have never been able to actually swallow any because the texture makes me heave. Other foods also have textures which I can’t tolerate. Pickle and chutney are two other major ones. Even just looking at lumpy pickle makes me feel sick! I can’t stand custard either because of school dinners I had as a child where the custard was lumpy!

Of course there are foods whose tastes I hate-these are mainly condiments such as balsamic vinegar and most types of salad dressing. Most of the foods I hate though have textures which I react strongly to. I cannot describe in enough detail just how nauseous these textures make me feel. I literally cannot bear the food being in my mouth. I know that a lot of people on the spectrum are the same. Next time you see someone who you know to be on the spectrum retching and gagging over their food, please don’t just assume that it’s behavioural and needs addressing through behavioural means. They are likely to be feeling genuinely ill at that moment and have no control over the way that their sensory processing system is reacting to that food. We are highly sensory people who make sense of the confusing world around us primarily through sensory means. This can be amazing when you come across a sensory experience that you adore but can be horrendously painful and literally unbearable when you come across something that you react badly to. This is applicable to all 5 senses but, obviously, in this post, is based mainly around texture/how something feels inside your mouth. Next time you view someone on the spectrum having what you see as a “tantrum”, please remember that they are likely to have been distressed by something interfering with their sensory processing system and please don’t judge them or their families harshly for it. 

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The internal battle between anxiety and self loathing

This post was prompted by something which took place earlier this week which made me reflect afterwards on how it made me feel and the complex internal battle that was taking place at this time. Before I start this post, I want to make it clear that I am fully aware that both anxiety and self loathing are not solely the preserve of those on the autistic spectrum but, to me, it is an important topic and one I wish to educate people about.

As mentioned briefly on this blog before, I have struggled with anxiety for many years. One of my key sources of anxiety is asking questions of authority figures that may cause them to think badly of me . I know that, in general, people are brought up to respect people in positions of authority but, in my case, it goes beyond that into a pervasive fear of these figures in certain situations. When I have to ask them something for which I cannot predict their answer, I get reduced to a state of extreme nervousness. I start trembling, lose my ability to speak clearly (and often lose my ability to speak at all) and lose my ability to even look in their direction. Whilst all this is happening to me, another part of me understands that getting into such an anxious state is completely irrational and it is this part of me that then deteriorates into self loathing. At the same time that my stomach is tightening and I am experiencing all these other physical symptoms of intense anxiety, the other part of my mind is continually ranting about how I am stupid to be getting so anxious and that my inability to control my anxiety at that time is pathetic. It is this part of me that makes me distressed as I can be so harsh with myself.

Earlier this week, I was in a position where I had to ask an authority figure at work a question which, to me, was a difficult subject to broach. I needed to know the answer to this question by a certain date as it involved visa requirements for a holiday (long story and one that I won’t go into here). As I went into work that day, I already had the warning signs of anxiety because I knew that I had to ask this question. I kept attempting to pluck up the courage to ask it and, every time, my courage would fail me. My hands started shaking and the part of my mind that wasn’t consumed with anxiety began taunting me with thoughts such as, “You’re letting everyone down!”, “You’re letting your boyfriend down! He’s relying on you for this!” and, “Just stop being so pathetic and ask the question! Man up!” These thoughts made me distressed which, in turn, made my anxiety spiral even further. My mind was consumed by these thoughts and, although I managed to still complete the work related tasks that needed to be done, the continued negative thoughts at the back of my mind made me feel like I was worthless. The person I needed to speak to then left for a work related meeting. I was  furious with myself that I hadn’t yet plucked up the courage to ask him such a simple question that should take two minutes to ask. I then emailed him, letting him know that I needed to discuss something with him. This is something I should have done a lot earlier. I find typing a lot easier than speaking, particularly in situations where I am feeling anxious or nervous. I eventually did ask the question but it was extremely hard for me to do so. I can’t bear the thought of someone that I respect thinking badly of me and the anticipation that they may think badly of me makes me fearful of asking them anything that may make them think this way.

I had a similar experience with a member of security staff at the accommodation where I live a few weeks ago. I was locked out of my flat and needed to get back in but I was utterly convinced that this security official would berate me for being stupid and leaving my keys in my bedroom. I keyed the number into my phone and sat there staring at it for 20 minutes, willing myself to call it but terrified that the consequences would be severe. Of course, in the end, it turned out well, as these things have a tendency to do. I always feel embarrassed and humiliated afterwards when I reflect on what happened and think about how I must have come across to others at the time. I know, in my mind, that it is not “normal” for a 27 year old woman to be so scared of asking a simple question or making a simple request that she loses her ability to speak but I can’t work out how to prevent the anxiety from spiralling when my normal coping strategies don’t work.

Living with the internal battle between anxiety and self loathing is exhausting. It is bad enough going through it at the time that you are anxious but then your mind helpfully decides to play over the event afterwards and then you feel horribly embarrassed even when the rational part of you knows that everyone else involved has long since forgotten about how you appeared, if not forgotten about the event itself.

I urge you-if you know someone who becomes anxious easily, please don’t use the phrase, “There’s nothing to worry about! Just chill out!” or variants of that phase. People living with anxiety know that, in most cases, it is irrational and out of proportion to any actual threat. Often part of their mind will be telling them furiously that they are pathetic for getting so stressed out over something which, in the grand scheme of things, is tiny. They have enough self criticism to last them a lifetime-they don’t need criticism from anyone else, even when it is well meaning and said with good intentions.

Hyperfocus and obsession

One trait that is shared by a lot of people on the autistic spectrum is that of being able to hyperfocus on something which is fascinating to us. When I am interested in something, I can spend up to 10 hours at a time obsessively researching it and everything related to it. I believe that it is this trait that allows us to retain so much information about our obsessions and spend so much time on them.

A lot of people who aren’t on the spectrum don’t fully comprehend the level of concentration and time that we dedicate to our obsessions. I have met a lot of people who say that they are obsessed with something-a particular TV show or a band, but actually can’t retain half as much information as I would be able to if I was obsessed with the same thing. I guess it’s a fundamental difference between how people on the spectrum class as an obsession versus how people who aren’t on the spectrum class it.

Several people have asked me in the past how I can concentrate on researching something for such an extended period of time. My answer is that I see it from a different perspective. To most people, researching topics seems tedious and boring (and indeed I find research boring when it is based around a topic that I have little or no interest in) but, to me, when I am researching a topic that I am obsessed with, I don’t see it as work-I enjoy it and see it as fun. I can get so absorbed in what I am researching that hours can go by between when I look at the clock. Even in the days before wireless Internet, I used to spend hours poring through Mothercare catalogues memorising all the different models of pushchairs available in their High Street stores. I was six years old when I had this obsession and I could hold my concentration around the topic of pushchairs far longer than the average six year old.

Hyperfocus can also be a highly useful trait in the field of academia. When I was interested in the topic of a particular essay, I never needed to spend a little bit of time on it each day-I would just research it avidly and then write it in about an hour and a half. I know that the same can’t be said for everyone with Aspergers and that some people with the condition really struggle to focus themselves academically but, for some of us, hyperfocus is a gift that enables us to achieve well academically.

I want to push the point here that hyperfocus is not solely the preserve of those of us on the higher functioning end of the spectrum. It may present itself in a different way in people who are more severely affected by autism but it is still there. The stereotypical example of a child with autism spinning a particular object for hours on end-that is an example of hyperfocus. They get so “in the zone” that hours can pass with them still doing the same activity. Yes, this would be classified as a self stimulatory behaviour but the sheer length of time they dedicate to this activity indicates hyperfocus and it should be understood as such. Just because it may not be seen as beneficial to the world in the same way that an autistic lecturer’s knowledge on his or her specialist subject is, it does not mean that their ability to focus on something for an extended period of time should be doubted. 

There is also what I call the negative side of hyperfocus and this is when it is related to something that you actually have little interest in. An example from my personal life is the tendency that my mind has to hyperfocus on emotions and analyse all the previous occasions when I have made social mistakes and then realised them later. My mind will hone in on one particular incident and go through it in exruciating detail. This is what I refer to as “over thinking” and it is the part of the personality that causes depression and anxiety in a lot of people with Aspergers. There is actually no scientific proof that it is related to the trait of hyperfocus but that’s what I believe from my personal experience.

Overall, though, I love my ability to hyperfocus on topics which are interesting to me. It means that I never get bored as there is always something to be done. I can spend entire days reading topics on Internet forums and blogs that many may view as time wasting but, for me, it is a hobby and one which I enjoy immensely. I just need to learn how to rein it in sometimes!

Please consider that obsessions you may simply view as a waste of time and energy are enjoyable to people on the autistic spectrum. They may be stranger than the average hobbies but that does not mean that you have the right to mock people for being interested in them. Obsessions often stop people on the spectrum from feeling miserable and this is a viewpoint that I have seen a lot online. Nobody has the right to take away somebody’s source of happiness as long as it is legal and harmless-please remember that next time you want to take somebody’s obsession away from them.

My thoughts on Applied Behavioural Analysis

Disclaimer-as many of you will know, the use of Applied Behavioural Analysis in children with autism, particularly those who are severely affected by autism, is a hugely controversial issue and this blog post is about my own personal views which I am aware some people will not agree with but my intention is not to offend and I am very sorry in advance if anyone is offended by my views.

Yesterday I watched a programme on the BBC IPlayer website which was called “Autism: Challenging Behaviour” and was originally shown on BBC 4 on Tuesday night. The programme had the right amount of balance in my opinion and featured interviews with people who were both strong believers in ABA and those who were against ABA. I found it a hugely fascinating programme. Like many people on the autistic spectrum who I have met online (oddly enough, it’s not a discussion I have ever had with those people on the spectrum who I know off line but maybe that will change), I am not a fan of Applied Behavioural Analysis. I agree with one of the principles expressed in the programme by tutors at a special needs school that used individual Applied Behavioural Analysis, namely working on negative behaviours so that the individual child enjoys life more. Every parent wants their autistic child to make progress and, indeed, a lot of people with autism who are verbal will say that there are aspects of their autism that they would wish to improve on. However, I disagree with the type of approach used. To me, it seemed a lot like training circus animals with a heavy emphasis on food as a reward (which is something that most professionals working in special needs schools avoid, at least here in the UK). The programme even mentioned how the approach had originally been tested on rats and pigeons. People with autism are not animals and treating them in such a basic and, to me, patronising manner makes me feel hugely uncomfortable. The autistic spectrum is extremely complex and varied and I thought that the school featured in the programme were dismissing the individual differences between children and using a “one method for all” approach.

I was also upset at the attitude of a Scandinavian ABA therapist, Gunnar Frederiksen, who was filmed during ABA sessions with a 3 year old boy in Norway. This therapist explained, with seemingly no regard to the feelings of people on the autistic spectrum, that he did not appreciate autism and could not see anything positive about it. I do not agree with this attitude. Every person with autism is special and sees the world in their own unique way. I have met and worked with a lot of people with severe autism who see the world in such a special way-their ability to get so much enjoyment out of what other people see as the tiniest things in life, such as certain sensory material, is a joy to see. As I have mentioned on this blog before, autism is an integral part of who we are and what ABA, at least the ABA practiced by Gunnar, seems to want to do is to “remove” the autism from the person. Autism, to my mind, seems to be one of the only conditions that attracts so many people who wish it to be cured. As somebody on the film mentioned, if they spent 40 hours teaching their child how to play the violin every week, it would reach the attention of Social Services but, with autistic children, ABA is seen as something positive because the idea of it is to make the child more “normal”. This is my main contention with ABA-autism is normal to us. It’s how we were born and, while huge progress can be made in everyone with autism, I have seen online that a lot of people on the higher functioning end of the spectrum who have been through ABA as children feel guilty as adults when they have urges to stim or are put in a situation that highlights their autistic traits. It is exhausting for us to fit into a world that wasn’t made with us in mind and yet people just demand “normality” from us without taking a look at themselves and how they could change their behaviour to get the most out of people with autism rather than making them feel continually distressed and traumatised.

I understand that some people will look at this post and think, “She doesn’t know what she’s talking about! ABA is designed for people on the lower functioning end of the spectrum, not people with Aspergers!” I am aware of this but, as someone with Aspergers, I feel obliged to defend people at all levels of the autistic spectrum. I don’t presume to speak for others but I am sure that people on the more severe end of the spectrum have their own views on ABA which they struggle to express because of their communication difficulties but that does not mean that we should not listen to them and work out their feelings on this through observation. Yes, people with autism need to learn new skills and need to learn that certain forms of behaviour, such as lashing out at others, aren’t the best way to communicate but some of the children in that programme were clearly distressed and were being pushed into things that they weren’t ready for. There was no denying that both of the little boys at the special school that used ABA had made a lot of progress by the end of the 6 months that they were filmed but my opinion is that progress can be made with other, less intrusive methods of support. Autism often appears to improve with age, particularly as people learn more about their own autism and devise coping strategies to get through life. This often happens regardless of the support method used, as long as they get support from somewhere. I do understand how upsetting it is for parents to be given such a poor prognosis for their child when they are first diagnosed with autism and I can understand why such parents often opt for ABA. These parents need support but I would just urge parents to really consider the best support for their child and consider the psychological impact of ABA. In the programme, a man with Aspergers, Damian Milton, who I have met off line in an Aspergers support group based in my old university town, speaks about how a lot of the principles of ABA seem to be giving a message to the child with autism that they are only worthy of love and affection when they display what is seen by people without autism as “normal” behaviour. I dislike the fact that ABA practitioners often try and get rid of stimming in people with autism. As mentioned on this blog before, stimming is a coping mechanism and a lot of people with autism have said before that, if they were not able to stim freely, they would be unable to cope with the busy and demanding world around them. It is not harmful to others so it really confuses me as to why so many people are against it and wish to eliminate self stimulatory behaviour in people on the autistic spectrum. In the school featured on the programme, one of the ABA tutors commented on how stimming stops children from being able to learn new skills. This, to me, displays a lack of understanding of stimming as a functional behaviour-a lot of people on the spectrum actually use stimming to help them concentrate on learning new skills. I don’t understand why people seem to find it so offensive. It might not be socially “normal” but it is our “normal”. As one woman with Aspergers mentioned in the programme, “It is a form of cruelty to deny someone who they are”. We do not try and change your coping mechanisms so please don’t treat ours as something so awful and horrendous.

I guess my final point is that, while I do agree that people with autism and their families should aspire to make progress, just as everyone in life should, this can be achieved without the use of ABA. I hope I did not come across as too harsh towards people who are firm believers in ABA but I do believe that being told every day that, essentially, the way you think is not desirable or socially acceptable leads to psychological issues such as anxiety and low self esteem which are often 100 times more damaging to an individual than their autism is. Observe the person with autism and learn from them in order to work out the best support method for them. I am not denying that ABA can lead to huge amounts of progress and there are some people with autism who have been through ABA and support it but I just think there are other ways to achieve the same goal. This world seems to be obsessed with “normal”-ask yourself why it is that there is such high rates of depression and anxiety in people on the spectrum and the answer is usually because of the attitudes of other people. Surely this is something that also needs to be worked on rather than the onus being solely on people with autism to fit in.

Once again, I am sorry if my views on this controversial issue offend but I watched the programme yesterday and it inspired this blog post. I know that I am not the sort of person that ABA is used on but it is an issue that I feel strongly about.