Embracing Neurodiversity, building a community of neurodivergent thinkers and allies to drive change

So much can happen in three months. For me the last three months, since I last shared a post with you, have seen me start something new. Something that I am quite excited about. I have taken the bold step and launch a new initiative call Me.Decoded - it is focused on providing a platform for others to share their personal thoughts and experiences, with the goal being to promote Neurodiversity.

It is not just focused on autism (though of course, this is a big focus). Being about Neurodiversity, it also includes dyslexia, dyspraxia, dyscalculia, ADHD, ADD, OCD, Bipolar, Sensory processing disorder and all other neurodevelopmental differences.

The launch of Me.Decoded has been greater than I could have hoped for, and I have had so many people get in touch about sharing their stories and becoming regular contributors to the site. I also shared my own personal story, where I shared parts of my life that I hadn't previously shared publically (especially about my growing up). As with most blog posts that I write, I had my heart in my throat as I pressed publish. I was worried about my mum's reaction to sharing my story and wondered how others would react. Once again, my sharing my story allowed others to feel a connection (albeit virtually) and understand that they are not alone in their struggles.

I cried this week when I was sent a message from someone who said that in discovering Me.Decoded, they had "found a sense of belonging". This is what I think so many people are looking for. To feel understood, and feel like they belong. I hope that as more people choose to share their stories on Me.Decoded, this sense of belonging can be felt by a greater number of people. There truly is a power in the sharing of personal stories.

So what does this mean for Life and ASC? It means that I will not post as often as I have done in the past, but I do still plan to blog. I have set myself a goal of trying to post at least once a month, as there is still so much I wish to say and I don't want to say goodbye to Life and ASC which has been such a big part of my life for the past few years.

I do hope that you will pop over to Me.Decoded and let me know what you think. Also if you, or anyone you know, is interested in sharing your story / thoughts/ or tips for Neurodiversity then please do get in touch.

Two weeks ago my 8-year-old son gave me some insight into his views about autism, when we spoke about an article written by a mum who literally pushed her autistic son to see an Elmo show. After worrying last year about my son saying he was learning to be normal, I was buoyed as I listened to him speak about his autism and his thoughts on the situation described in the article.

Long before I ever heard about Neurodiversity, or received my own diagnosis, I made a decision to be open with my son about his autism. From day one we told him that it was a difference which meant that sometimes he needed a little extra support in the same way that Daddy needed glasses to see.

As someone who was bullied at school for not fitting in, I wanted my son to own who he was. Verbal bullying only works when people say things that resonate with your secret doubts about yourself. It is much harder when you have confidence in who you are.

In our house being autistic is a factual part of who we are, and we often have open discussions about it. We talk regularly about behaviours and triggers, and the need to work through our frustrations in a less challenging and confrontational manner. We push the boundaries of what is possible, and try to work through situations when heightened anxiety gets in the way. When dealing with challenging behaviour, we try to understand the possible reasons for the behaviour and address those. 

This is not to say that I am someone who only focuses on the positives. I am a parent and, like all parents, find that raising a child can test my limits. At times the additional challenges of heightened anxiety, demand avoidance, and challenging behaviour feel like more than I can cope with. There are days when I scream and days when I cry. These are the days when I question “where is the support” and the guidance to get through it. Some things just don’t make it into the what to expect parenting books.

Recently my son refused to continue his weekly swimming lessons because his favourite swim teacher was unexpectedly ill for a long period of time. My son loves to swim, and absolutely loves being in the water. Despite the love of swimming, he refused to enter the pool without his favourite swim teacher. For 6 months we tried every Saturday, with no luck. No amount of cajoling, bribing or enticement was enough to convince him. He point-blank refused and any attempt to encourage him to take part would result in him getting agitated. In fact, he didn’t even want to be in the pool area while his sister had her lesson. It was frustrating as we knew he would enjoy it, if only we could get him in the pool.  We were ready to give up when the teacher came back. That day he was straight back into the pool.

So it was with interest that I found out my husband and son had talked through a recent article in the Washington post where a mum describes how she forced her son into a theatre to watch an Elmo show, knowing that he would enjoy it despite his initial fears. It was a difficult read, as the mum had to literally push her son kicking and screaming while people around her commented and stared.

When I read the article I cried. I recognised the sentiment of “if only we could make it past the curtain, then everything will be ok”. I have been there myself, but the situation described seemed so extreme that it concerned me. All I could think was "why couldn't they have found another way".

In my mind, I saw the scene play out and felt the boy's fear as I read about him screaming and trying to get away as he was pushed towards the unknown. I wanted to take back that moment for them. To have Elmo meet them at the door, and guide the into the theatre whilst entertaining the boy with something that was familiar to him. I wanted the family to have the theatre to themselves so that they could have the time to move forward at their own pace, only moving forward when they felt ok to take the next step.

My son’s reaction was a little more candid. In his view it was torture. Even when told that the little boy eventually enjoyed the experience and was able to enjoy other things as a result of his mum pushing him, he was adamant that the mum was wrong. When asked what the mum should have done instead, he responded “let him do it his way, and wait for him”.

My husband pointed out that the mum felt she was trying to help her son so he could enjoy the same things as all the other children, and felt that his autism was stopping him from doing that. My son’s response made me realise how much he has embraced autism as a part of who he is. He told us, “autism makes you special. You shouldn’t try and get rid of it. My autism gives me fidgety eyes so I can spot things really quickly. I can spot Lego pieces quicker than you can”.

We don’t often get to know what my son thinks as he doesn’t like to talk about his thoughts, so this was a great insight into how he feels about autism. He doesn’t know about the challenges of learning difficulties or difficulties with communication, so I don’t think he can fully appreciate the situation between that mum and her son. Despite that, he has given me something to think about.

For my son, the possibility of enjoyment is not enough to warrant pushing him past his limits when he is struggling with the uncertainty of something new or different. He would much rather pick out Lego with his fidgety eyes, and be given the time and space to get through things in his own way. We will continue to push him out of his comfort zone, but will try to be careful to ensure that we are not taking his so far past his limits that it feels like torture to him.

What a great time of year to celebrate women. With Mothers day and international women's day, I want to take time to recognise some of the amazing women who are doing what they can to change the world. These are definitely women who encapsulate what it means to press for progress.

Over the past year, they have collectively achieved so much in shaping the world around them. I have beamed with pride each time one of them are invited to speak out in the press in order to raise awareness for some much-needed changes. You may have heard them on Radio 4, seen them on ITV's This Morning, BBC's Victoria Derby Show, Sky news, or read about them in all the major (and many local) newspapers.

Welcome to the second edition Neurodiversity notions linky, where you can share and read posts relating to neurodiversity in educational settings and workplaces. This includes Dyspraxia, Dyslexia, ADHD, Dyscalculia, Autism, Bipolar, OCD, Tourette Syndrome, and others.


I can't believe it has been a month since I launch my Neurodiversity linky. So much has happened since then. The big news is that I have buy-in from the Head of my company to establish Neurodiversity at work. I am so extremely excited about the possibilities, whilst being a little (lot) nervous about how it will all turn out. 

neurodiversity - lessons from past change makers

I believe a step change is needed for Neurodiversity, which requires making people stop and think. To think about their long-held views and beliefs, question what is right, and consider what needs to change going forward.

I was reminded of this as I watched David Letterman interview Barack Obama, and again when I  read the articles celebrating 100 years of women being given the right to vote. Since then I have been thinking what change-makers of the past can teach us about getting society to embrace Neurodiversity.

connecting with my autistic son and developing the love I thought would never happen

There is nothing that I have wanted more than to feel loved by my 8-year-old son. Unfortunately, he just didn’t want to love me and nothing I tried made any difference. I was on the verge of accepting that we would never have a loving relationship when everything changed.

For years we have struggled to connect as love is something he measures and he routinely told me that he didn't love me. He loved his Dad, but not me. It hurt, and I feared that we would never have a bond. Even worse, he wanted nothing to do with me and insisted that I didn’t go near him or do anything for him. If I brushed past him, he would physically recoil and try to brush off my touch.

I was an unwanted presence in the house. The person he wanted to come into the house via the back door, so he knew to be excited when Dad got home. No matter how hard I tried, I just couldn't do anything right and I couldn't win him over. Everything that went wrong was my fault, and the praise for anything that I did right was attributed to Dad.

We were always at odds with each other, and I would routinely end up shouting at him in frustration when he refused to listen to me. I sometimes wondered if it would be better if I wasn't in the house, as I worried that my own behaviour was having a negative effect on my kids. Parenting was anything but a positive experience and the lack of love was not bringing out the best in me. I was an angry parent, and my guilt about not having a bond with my son was all consuming. What kind of mum doesn't connect with their son?

Then we found Pokemon. Or to be more accurate, I found Pokemon.
when the uncertainty of holidays for my autistic son threatens to spoil the fun

EuroDisney. The place of childhood dreams,  and the destination for our next family holiday. With just over a week to go, I should be excited. The problem is that I can't stop thinking about our last holiday, and wonder if we are destined to face the same struggles this year.

Our last holiday promised to be a great family break. We found a good deal at a hotel in Banff in Canada. It looked like a castle and the family were excited about the prospect of skiing. We had prepared the children for what to expect and made sure that we took plenty of their favourite toys to play with while we were out there for the week.Unfortunately, the trip was memorable for all the wrong reasons.

Welcome to my new Neurodiversity notions linky, where you can share and read posts relating to neurodiversity in educational settings and workplaces. This includes Dyspraxia, Dyslexia, ADHD, Dyscalculia, Autism, Bipolar, OCD, Tourette Syndrome, and others.

On the first Thursday of each month I will post a new linky asking for people to share any posts relevant to embracing neurodiversity in educational settings and workplaces. I hope it will become the desitination for posts on strategies, challenges, thoughts and advice relevant to supporting neurodiverse needs and establishing cultures which embrace the benefits of neurodiversity.

For those who have not heard of a linky before, it is a way for bloggers to collectively share blog posts on a common topic. It is a great way for fellow bloggers to share their own posts, and for my lovely readers to discover new posts.

Each month I will share one of my own posts and will choose a favourite post from the month before, which I will also share on my Facebook page, twitter feed and pinterest page.

This month, I am sharing my post on the change that I want to make for neurodiversity in 2018. Hopefully this linky will help bring about the changes I hope to see.

I look foward to reading your posts, so please feel free to share your posts (old or new). If you have any questions, please contact me.

The rules

  1. The linky will open on the first Thursday of each month, and will remain open until the last day of the month
  2. You can link up to two posts each month.
  3. Please comment on my host post and at least one other post, including #NeurodiversityNotions in the comments. 
  4. Share your posts on instagram, twitter and pinterest with the hashtag #NeurodiversityNotions. I will reshare items where you mention me (@LifeAndASC).
  5. Include the linky badge in your post, by copying any pasting the html below into the bottom of your post
  6. Please be kind and respectful of each other. If you do disagree with someone, please be considerate in your response. Change can only become reality when we find a way to positively work through our differences. 

to effectively manage behaviours you need to understand why they are happening

Addressing behaviours is often like solving a mystery. Just focus on the behaviour and you will likely end up frustrated, hoarse and defeated. Try to work out the reasons behind the behaviours, and you have a greater chance of successfully reduced the unwanted behaviours.

I have previously written about dealing with my son's challenging behaviours which often left me feeling overwhelmed, and the questioning of whether our parenting was to blame. I searched for weeks on end for answers on how to stop a variety of behaviours including biting, constantly shouting, meltdowns, refusing to co-operate and not paying attention in class.

No matter what we tried the behaviours got worse. Our son refused to listen and life became increasingly difficult. The lowest point came the day that he was found holding a cushion over a classmates face. I was mortified and concerned that my son was beyond help, as nothing we said made any difference and we felt powerless to change his behaviours.

Something had to change. We had to change.

Understanding more about anxiety and meltdowns, helped us to reframe our thinking and move away from thinking that we needed to discipline the behaviours we wanted to stop. It was a leap of faith, and one that many people around us didn't agree with. After all, you don't want to let children get away with "naughty behaviour". Just think of how much worse they will get without being disciplined.

Let's stop for a minute and think about what we were trying to achieve. We were trying to stop the behaviours. Discipline is just one way of trying to achieve this. In our case, disciplining negative behaviour and rewarding positive behaviour wasn't working. Our son didn't seem to be in control of his actions, it was as if he was permanently in a state of "fight or flight". Trying a different approach does not mean that we are ignoring the behaviour, is just means that we are trying to find a more productive way of addressing it.

So we started to ask why.

With each new incident, we tried to understand more about what was happening. What were the events leading to the incident? Were there any common factors prior to the incidents? Could our son have sensory issues? Could our son be anxious?  If so, what could be the source of that anxiety? Did our son have the skills to effectively deal with challenging situations?

We began to build a picture of where the real issues were, and were able to identify the triggers which would lead to negative behaviours.

This included:

  • Sensory and proprioception issues
  • Social communication difficulties
  • Difficulty adjusting to uncertainty & unexpected change
  • Over-stimulation in social events
  • Challenges with seeing something from another person's point of view
  • Emotional self-regulation & impulse control
  • A need to feel in control
  • Limited understanding of the impact his actions have on other people

By spending time working out and adressing the underlying reasons, we have been able to address the behaviours which have largely disappeared and we are no longer in the state of high alert that we were once in. This has taken us years to understand, and there are parts of the picture that still aren't clear but we are getting there.

We now look out for early warning signs. As soon as I start to see the signs, I take a step back and try to figure out what has changed. Often it is something quite obvious like an impending holiday or birthday, where my son is struggling to manage his excitement or is struggling with the uncertainty of what to expect. Other times it is less obvious and we spend weeks trying to work it out. Focusing on trying to understand the reasons has boosted my own resilience as I no longer feel powerless to change things, and know that when things get difficult it will pass as soon as we identify the reason.

Interestingly, my son is not the only person that I use this approach with. I have noticed that I am increasingly using this approach at work. If someone becomes increasingly difficult or confrontational at work, the first thing I do is to try work out why. As a project manager whose job it is to bring about change, this has helped me to work through challenging moments and to look beyond the immediate problems to identify the true issues which are preventing us from moving fowards.

Dealing with challenging behaviours is still not easy for me and I still have moments when it all gets too much, however focusing on understanding "why" has helped me to cope and to feel more in control. After all, you need to understand where someone is coming from before you can point them in the direction you want them to go.

You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.

Your views

Leave your comments below.

Do you struggle with challenging behaviour? How do you work out the hidden reasons? What strategies work for you?

changing mindsets to support autistic people is often the greatest reasonable adjustment needed

I first learnt about reasonable adjustments when trying to stop my son's school from excluding him because of his challenging behaviour, almost three years ago. The daily stress was exhausting and frustrating as we desperately tried to persude them to support rather than exclude him. Looking back, I can see that we were fighting for the most difficult of reasonable adjustments, which costs nothing. A change in mindset.

There were many reasons given as to why reasonable adjustments could not be made. Cost, time, and availability of staff. There was even the view of not wanting to give allowances or "special treatment" in comparison to the other children.

I wonder how different things would have been if they realised that the biggest, and most impactful change, was a change in their own perspective. Viewing my son's behaviours as something other than him being naughty or out of control. How different it would have been if they had been open to exploring what was possible rather than forcing us into a corner where we had no option but to fight the exclusion.

Without the emotional battering we could have focused on my son's needs and making informed decsions. We most likely still would have left the school, but without the guilt and shame that we were made to feel when our son's behaviours became increasingly challenging.

I know that we are not the only ones. I know of many parents with similar battles, and struggling against a negative mindset is a common theme in their stories. The parents blamed for their children's behavour, the teachers unwilling to consider even the simplest of reasonable adjustments, and the children accused of willfully acting up.

In fact, this is not something that it limited to schools and education. It carries on into the workplace, and the society around us.

People discounted for being different, or excluded because they don't fit someone elses definition of success. Written off for not being sociable and outspoken, struggling to be a team player and being difficult to get along with. Behaviours are judged without understanding and terms like "lacking gravitas" and "not being a cultural fit" are used as generic reasons for saying no.

In many of these cases making reasonable adjustments could lead to a different outcome and a different set of behaviours. This could include training, changes to the workplace environment and support in difficult situations. If only people could see what could be possible if we approached common activities a little differently.

My son is an example of how little changes can make a major difference. In a more understanding environment, his behavioural issues virtually disappeared overnight. He went from being physically isolated from the other children in his class and refusing to participate in any lessons, to having friends he regularly plays with at school and being a voracious reader with a love of Maths & Science. We have a long way to go for him to make up for the two years that he missed out on, but we have made great strides. If only the first school had been more open to considering what might be possible, and we didn't have to fight so hard to bring about the changes he needed.

The reality though is that without a changing mindset, the likelihood of anyone being willing to consider any reasonable adjustments is low.

Changing mindsets

I am just beginning to learn about what it takes to start changing mindsets, and I know that that I still have much to learn about this. I also know that this is the most challenging thing of all. From the conversations I have had with teachers, colleagues and carers of autistic children I believe that changing mindsets starts with the following.

Establish relationships. It is much easier to get people onside when you have taken the time to invest in the relationship. Whether it is finding ways to help out at school or putting in time with colleagues to help them with their own problems, this extra effort can pay huge dividends when you most need it.

Enlist help. This could be other parents, local support groups, colleagues or charities. It is easier to bring about change when a larger group of people are calling for the change, and the support of additional people around you can help you keep going through the tough times.

Highlight the benefits. Showing how embracing the change could be beneficial for others will help win them over. Whether it is highlighting to a teacher how some of the reasonable adjustments could be benficial for other children in the class, or highlighting to team members how a change in working style could bring about better results for the team.

Share examples of success. Sharing examples where changes have been successfully implemented elsewhere can help to reduce the resistence to change. Talk with other families, charities or organisations to find examples of success cases that you can reference to build your own case for change.

Prepare to be challenged. Not everyone is going to agree, no matter what you try. Be prepared to be challenged, and use your support network to help you through the challenging times. Often persistence and perseverence are the only ways to keep moving foward until you find an alternative way to work around the people standing in your way.

Sometime it is so tempting to step back and say "this is too hard". I know that I often feel that way. At times like that I remind myself of why I am doing this, and take comfort in the fact that I am not alone.

I believe that we will change mindsets, both individually and collectively. For me there is no other option.

Spectrum Sunday

You can find me on Twitter and Facebook. You can also sign up here to receive future blog posts from me, as well as my weekly round up of SEN & autism blog posts from other great bloggers.

Your views

Leave your comments below.

Have you struggled with needing to change mindsets? What strategies have you used for changing mindsets?

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