Sunday, October 30, 2016

Published Sunday, October 30, 2016 by

If autism were a cake - working out the recipe

autism is more than one diagnosis


Recently I was asked about my son's autism diagnosis, which quickly led to a discussion about how getting his diagnosis was not down to a single event or point of view - there was no one diagnosis that covered all of his needs.

Getting a diagnosis involved discussions with school about his observable difficulties, meeting with experts who each provided their professional opinion, and making our own judgements based on our increased understanding of autism.

To date we have had input from over 16 professionals, teachers, SENCOs and support workers who have each observed, written reports, noted difficulties, and suggested support strategies. I have two lever arched files filled with reports, letters and logs detailing everything that has been discussed and noted to date.

It was only by combining these different insights, trying out the suggested strategies to see what worked and providing our personal insights from daily life with our Son, that the professionals involved have been able to form a fuller picture of his particular needs and his diagnosis.

It was a bit like trying to figure out the recipe for a cake.

Now I am no baking expert, and won't be entering Great British Bake Off (on BBC or Channel 4), but it did get me thinking of the many ways that trying to get a diagnosis was like trying to work out the recipe for a cake.

So here goes ...

Working out the recipe

The search for the right recipe starts with the cake.

You need to understand the cake before you can start to thinking about the recipe. An understanding of what it looks like, the texture and the taste helps you judge when you have got the recipe right. Just think about what often happens in the technical challenge when people are asked to bake something that they have never some across before. 

You need to understand the person before you can begin to understand what their needs and diagnosis is.

This was one of our biggest challenges when getting a diagnosis - it takes time to understand a person and the reasons for their observable behaviours. Professionals only have limited time to make their observations, and the reasons for observable behaviours can be complex and varied. This means that is is not always easy to determine the diagnosis.

Is it a Cake?

First you need to make sure that the cake is indeed a cake.

Sometimes there can be differences of opinion about what is or isn't a cake. McVities ended up in court to contest that Jaffa cakes should be classed as cakes, so that they wouldn't have to pay tax. Sometimes a judgement call is needed to make the call between what is a cake and what is not. 

One of the main challenges in diagnosing autism, is that the cause of observable behaviours can also be put down to other reasons. Autism can often be missed or misdiagnosed. In some cases parenting can be blamed, or indicators are linked to other conditions including dyspraxia, dyslexia, Attention Deficit Disorder and Social communication disorder.

Working out whether it is autism or something else is key so that the right support is considered to meet your child's needs.

Key Ingredients

The first step to working out the recipe is to think about the key ingredients.

Cake's typically include several key ingredients of cakes - including flour, eggs, butter and milk. The variety comes from how you mix these ingredients together, and the additional ingredients that you include in the recipe. However, there are exceptions - you can make gluten free cakes without flour, egg free cakes and oil based cakes which don't require butter.

There are some difficulties that those on the spectrum will usually have. This includes social communication and social interaction difficulties, with restricted & repetitive patterns of behaviour which limit/ impair every day functioning. (source: NAS).

Other difficulties may include learning difficulties, over or under sensitivity to different stimuli (incl. sound, touch, taste, smells, lights, temperature, pain), limited ability to use their imagination and a lack of theory of mind (the ability to understand that other people have their own thoughts).

The criteria used by professionals to help diagnose autism are listed in DSM-V, however there needs to be a level of judgement when trying to come up with a diagnosis.

As with cakes, there are exceptions to the rule. Not everyone with autism will have all of these difficulties, and there are those who meet some but not all of the autism diagnostic criteria.

Cake Varieties

Once you haven the key ingredients identified you need to think about the the cake variety, as this can help you identify some of the additional ingredients to include and the techniques to use to bake the cake.

The list of cakes is endless - Mary Berry's ultimate cake book has over 200 cakes! And then you have the different ways that you can make the same type of cake, where you can use different techniques for mixing the ingredients to get different results.

Even with the same cake recipe, the end result can be different each time you make it. This is due to the fact that other factors such as the ingredients and oven used can have an impact on the how the cake turns out.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways. 
--National Autistic Society

Autism is classed as a spectrum disorder as it can impact people in different ways, which means that the characteristics can vary from person to person.

There are numerous labels for autism including Aspergers, Pathological Demand Avoidance, (PDA) Pervasive Development Disorder, High Functioning Autism (HFA), and atypical autism. These days the label Autism Spectrum Disorder (ASD) is typically used for everyone on the spectrum (source: NAS).

Even with all these labels it can be difficult to find a description that fits, as autism means something different for each person on the spectrum. Despite this, understanding which label(s) fits the most helps to identify which support strategies are most likely to work in supporting your child.

Family recipe

Where the cake is a family favourite, you can get the recipe from other family members.

In our family it is chocolate biscuit cake (though I do question whether it qualifies as a cake) - there is no family gathering that doesn't feature chocolate biscuit cake. Over time the recipe may evolve, Not everyone in the family will adopt the recipe, and it may even skip a generation. I have not yet tried the family recipe myself, though I am sure the time will come when I am asked to make it.

Autism is believed to be due to neurological differences, with strong genetic components (see research autism for more details). Just like the family recipe it can be passed down from generation to generation, with siblings of autistic children twice as likely to have autism (source: NHS).

This doesn't mean that everyone in the family will have autism, and those that do may have very different challenges from each other.

Professional insight

Baking is an art - from knowing which brands to buy for the best quality, to knowing how to judge when it is mixed enough, and how to get a level bake on your cake. These are the things that you can't know just from reading a cook book.

There is nothing like spending some time with a professional who is able to advise you based on their experience, and can offer you guidance on some of the finer points of your recipe and the techniques that you can use to get the best results from your baking.

Even with this advice you may need to tweak their suggested recipe to account for personal taste, and your own equipment (mixer, oven, cake tins) which is slightly different to those that the professionals use. After all, how many of us have a kitchen to rival that of professional bakers.

There is so much information out there, and in the beginning it can be difficult to know what does / doesn't apply to your child. Professional insight can really help you to understand more about your child's needs and the techniques needed to support them. 

It is through the many professionals that we have found out about social thinking, dealing with demand avoidance, how to handle transitions, managing anxiety and improving self-regulation. In many instances we have had to tweak the advice to meet our individual needs, however it has been key in helping us to make the progress that we have.

Decorations

When thinking about the cake, you also need to think about the decorations.

Cakes can be served with minimal decorations, like Victoria sponge, or topped with more decorations than a showstopper challenge. Often it is the decorations which distinguish one cake from another.

Autism can often occur with other other conditions including dyspraxia, anxiety, ADHD, learning disabilities, sensory issues, and obsessive compulsive disorder. For many people, autism is only part of the story. This is why it is not just about getting one diagnosis - in many circumstances you need a diagnosis for each of the different conditions that they have. 

Perfecting the recipe

Perfecting a recipe can take years as not all cakes are the same, different types of ingredients can affect different cakes in different ways, and some ingredients can be pretty hard to spot. Then there is the time required to perfect your backing techniques, and develop your bakers intuition to know when you

After two years we are still working out the finer details of our Son's autism recipe, but we think we have identified the main ingredients and are confident that in time we will be able to perfect the recipe to help him.

Our current understanding is that he is has atypical autism, with demand avoidant behaviour, social communication and self-regulation difficulties.

He struggles around other children his age, and does not do well with routine or transitions. He is a very logical thinker, of above average intelligence, with advanced language development, and an over active imagination (that he often gets lost in). When anxious he will increasingly try to control the world around him, becomes sensitive to noise, seeks out sensory input via touching different textures, and tries to get vestibular input via running around and jumping on/ off our furniture.

Cake wise - I would described my son as a marmite cake!* Slightly unexpected, somewhat unusual and completely changing the way we think about things.


* not your typical cake, but oh so yummy (you can try it for yourself here)
Spectrum Sunday