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

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Saturday, October 22, 2016

Published Saturday, October 22, 2016 by

Getting an EHCP - the process, useful links and parents stories


It is just over a year since we got our EHCP, and my Son is now making great progress with the additional support that has been put in place to meet his needs.

It definitely was not an easy journey. This was largely due to the constant uncertainty, trying to pull a huge amount information together & make sense of it all, and the rollercoaster of emotions as we progressed through each stage of the EHCP assessment progress.

You can read about our journey here:

Whilst researching what we needed to consider when going through the EHC Needs Assessment, I came across a number of links and parents stories which provided us with valuable insights. With a bit more time on my hands, now that the required form-filling has slowed down, I thought it would be good to try bring them together.

Hopefully this saves someone else a few hours (weeks) of surfing when they are trying to get their heads around the process and what is needed.

Support & General Resources

First things first, this is definitely a journey you don't want to face on your own as having support and guidance from others can really helps you keep going when things get tough. 

Here are some of the organisations which we found helpful when we were going through our journey. 
  • SOS!SEN - web resources, advice line, workshops, one-to-one advice sessions, advice clinics
  • ISPEA - web resources, advice line, tribunal support, training
  • SEND IAS - web resources, independent support, reviewing documents, attending meetings, providing advice
  • National Autistic Society - web resources,  Education Rights helpline

An overview of the EHCP Process 

Below is my view of the EHCP process, with key things to consider as you move through each of the different stages. This is not exhaustive, and is intended to help signpost you to the different things that you may want to find out more about.

A big thank you as well to the lovely team at Bucks SEND IAS who have worked with me over the past few months to ensure that my overview of the process was accurate.

overview of key considerations for getting an EHCP (education, health and care plan)



Here is the collection of resources I have found, and which I have tried to align to each stage of the EHCP journey. Do let me know if you know of anything else which I could add to the list.

The EHC Assessment Process


Inform


Request


Assess


Draft


Finalise


Appealing your EHCP


Reviewing your EHCP - Annual / Emergency Reviews

The process doesn't end when you get your EHCP, here are some of the links I have found which make reference to annual / emergency reviews (an emergency review follows the same process as annual reviews).

Legal Q&A

If you still have questions, then reach out to one of the many organsiations which can provide you with support (see above). For common questions, here are two FAQ which I have been able to find. 

Other parents stories

When we went through the EHCP process, the one thing I wanted was the personal insights from other parents who have been through a similar experience. Here is a collection of some parents stories who have faced the EHCP assessment process. If you have a story that you would like to share (published or unpublished), then do get in touch and I can add you to the parents stories.

  • Various families have fed back their experiences and thoughts of what it is like to go through the EHC assessment process on the ehcp journeys website 

Final thoughts

The EHCP process is daunting, tough, and at times the stress & pressure can be overwhelming. With everything that is going on, it is so easy to become isolated and to feel like it is you vs. the system. 

For those going through the process, or about to start the process, know that there are many options out there to help support you each step of the way. You got this!

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Saturday, October 15, 2016

Published Saturday, October 15, 2016 by

High & dry - nappy free after almost 7 years


So a little thing happened in the past 2 weeks - we are nappy free - after almost 7 years.

Six months ago we were regularly having accidents during the day, and getting dry overnight seemed like an impossible dream. The day time accidents were particularly frustrating, as it seemed like Son just didn't care and was making no effort to try to avoid them.

We raised our concerns about the daytime accidents with our paediatrician. At the time we were told to wait until we were able to reduce his overall anxiety levels (it was in the midst of the school exclusion battles as a result of his negative behaviour, largely due to anxiety). She felt that his brain was so overloaded with everything else that the signal to say "Hey, we need to go to the loo" was not getting through.

The paediatrician was right - as soon as the anxiety reduced, so did the daytime accidents.

Watching TV can still cause some issues, as Son can't tear himself away from the TV when it is on. Knowing that this is an issue, we have a rule in the house that you can't watch TV until you have been to the loo. We also keep an eye on him and look out for the signs that he needs to go. As soon as we see him squirming, we are quick on the pause button so that he can take a break. Some days he even presses pause himself.

Getting dry overnight has been bigger struggle and a long time coming - at first we tried everything we could think of :

  • Going cold turkey (a week of wet beds and a very unhappy child quickly put a stop to that)
  • Reward charts (made no difference)
  • Insisting on going to the loo before bed (cue massive battles and a refusal to go)
  • Midnight trips to the loo (grumpy boy in the middle of the night & tired parents meant that didn't last long)

Eventually we gave up trying, as it just created too much tension and involved too much effort from all of us. It was like a guilty secret - guilty because we had just stopped trying to change things.

Recently I came across ERIC, a charity which can help children with bowel & bladder issues. They have some great resources, and I realised that we weren't the only ones having difficulty. This gave me renewed resolve, and I began to consider getting a bedwetting alarm and seeking further professional advice (by consider I mean I mentally made a note to look into it if things didn't change).



Turns out that in our Son's case, he just needed time. Two weeks ago we forgot to put pull-ups on before he went to bed. In the morning he was dry. Realising that the time had come, we worked with him him to try more nights with out his pull-ups.

At first it was a bit like taking away a favourite comforter and he resisted, insisting that he was not going to bed without his pull-ups. We continued to gently, but firmly, encourage him and he started to agree to go without more frequently. Today I will be throwing out the pull-ups.

When I say a little thing happened in the last 2 weeks - I meant a HUGE thing. There were no great celebrations or shouting from the rooftops about out Son's latest achievement, however at home we are quietly pleased, with mini fist pumps all round

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