I see so much going around about how stimming is a good thing and helps regulate the senses for autistic people. Which is true, but what are the reasons for needing to stim and what if one persons stim is another persons sensory overload? 

I have noticed, that, we stim when we are overloaded and trying to desensitise, or when we have to process verbal and social information. 

Actually, since I began to homeschool my children, I noticed that they rarely stim as their environmental and educational/processing  needs are being met. 

So, this makes me wonder why the  autistic community are so adamantly promoting stimming, since, basically it is another form of communicating  that something is wrong or something happened to cause the need to stim. Isn’t this a behaviour like any other, that needs to be addressed rather than simply allowing the stim? 

Now, not that I’m against stimming, but it causes huge issues in my home. Verbal stims and movements actually impact on the sensory issues of others and cause them to have meltdowns. Advice such as, asking both individuals to compromise or finding separate rooms for them to go to has been given, but,when 2 people are essentially trying to block the other (at times one is non verbal) and neither is in control at that moment, then compromise is not possible. 

What is possible, is a low stimuli environment, that suits all individuals insuring that each individual has what they need, so that neither comes to a point where stimming or sensory over load is a necessary outcome. 

Which just brings me back to my point, is stimming actually a good thing and is it really possible to allow stimming to be free when it impacts on other autistic people in a negative manner?

Bridges over troubled waters

Ok so, I’ve been reading around. I noticed that there is a new wave of ‘autistic people are their own experts’. This got me thinking……..

I come from a long line of autistic people, who didn’t know they were autistic. They struggled, some more than others. Some of them just came across as difficult, but were tolerated because society wasn’t as demanding as it is now. But, my point is, they didn’t know they were autistic. They never knew the reasons for their difficulties ( I can still see this with undiagnosed adults) and because they didn’t know, they reasoned it off with mental health issues or that they were just ‘gifted’ and so daily life was beneath them. 

But, here’s the thing, it wasn’t autistic people who identified their struggles or broke down their issues. It wasn’t autistic people who began to observe the developmental differences between themselves and others. So my question is, how can autistic people call themselves the experts, when the information they use is not that of autistic people in the sense that their identity itself was recognised by non autistics. 

Now, I’m not saying that non autistic people are the ones to judge the autistic experience, they most certainly are not! I’m not saying that autistic people are not the best ones to go to, to understand, in context, the daily struggles and strategies that help. But, what I see is a very clear divide. Non autistic people can never understand the autistic experience, just the same as if a mother looses her child then the only people who would truly understand her would be other mothers who have lost a child. 

However, there are many autistic people I’ve met that don’t even understand their own autistic experience (diagnosed or not) and are not empathetic or helpful to other autistic people. Yet I have met non autistic people, who, couldn’t relate, but were more open and willing to do anything to support someone or just be there for them. They couldn’t understand, they can’t, their brain translates everything we say into their own neuro-experience. 

It seems that both are lost in translation and the answers lie in both experiences. It seems that autism is on its own progression. But we are far from merging the gap of expertise and balance. Support and diagnostic criteria are  still based on what is seen, and not what is experienced, yet our autistic experience would never have been discovered if this wasn’t the case. 

Just some food for thought….. 

The dangers of Behavioral therapy and compliance

‘In Russia there is a huge orphanage with rooms of cribs with little babies in them. There is an eerie feeling when you walk in…. because it’s so silent! These babies have learned not to cry, they’ve learned that their voices go unanswered ‘ 

So sad, but so true. And it’s the same with ABA or any ‘behavioural approach ‘. What we are doing by encouraging good behaviour and punishing or ignoring bad behaviour, is teaching autistic people to ignore their inner self. This has so many negative implications, but one I would like to focus on is the danger that compliance training creates especially in adult relationships, as so many autistic adults are in abusive relationships as a result. 

I am speaking from experience. I was subjected to behavioural therapies as a child. Encouraging positive behaviour my parents and teachers focused on and joined forces to ignore the ‘bad behaviour ‘. So I learned to comply and mask my difficulties. As I got older the guilt and self hatred became bigger as I fought ‘the demons’ inside me. I would constantly tell myself, ‘you should be able to do this’ and was always positive in my engagements. 

I just felt that I was a bad person. I was told that I was attention seeking and I accepted that I was the one with the problem and I was the one who needed to try harder. So I tried and I couldn’t do it. So I ended up marrying at a young age to someone who abused me and I could not identify that abuse because I had learned to be compliant and I had learned to mask my difficulties and blame myself. 

This is the situation of so many autistic adults. Many are unable to identify abuse because of ‘behavioural therapies’.  Not only that, but, because they have been denied a voice for so long, they are unable to sustain healthy relationships as adults because they learned to hide themselves in fear or because they were ignored. 

To undo the damage that has been done to me and others takes a life time. Healing is an on going process and part of that healing is to speak out against such harmful therapies. Autistic adults are speaking and we won’t accept being ignored. 

Why I mask (from an 8 year old)

I was making dinner and my son came in to me. He was 8 at the time and he came in flapping and jumping. 

‘Mum’, he said, ‘I’m glad that people don’t know I’m autistic’. I became disheartened and hoped that, through the years of helping him recognise and understand himself, he could find a way to be himself. So I turned to him and said, ‘oh why is that?’

‘Well,’ he said, ‘X in my class who has an SNA, they know he’s autistic. But they don’t understand him and make things worse!’ 

I asked him how did they do that? He said ‘they keep interrupting him and he can’t finish the sequences and then he gets confused and more upset and frustrated. Then he starts screaming and they try to help by bringing him on a walk, but they just don’t understand and he never gets back on track. That’s why I’m glad they don’t know. ‘

And this is why my little boy ‘masks’. Not because he thinks he needs to fit in or be like everyone else, but because he feels he needs to to protect himself against people who don’t understand. 

He knows the people who will understand, who are the very few and he can be himself around them. But his needs are compromised because he has built this mask of self preservation. 

It’s time people started listening to autistic voices and the voices of the next generation. No child should have to feel like they are alone. 

Behaviour, behaviour, behavior …

This is a word I come across daily. Recently, I reacted to a post, where a behaviourist, wanted to change the word behaviour into communication or alert. I appreciate the effort to progress in this area. But there is still so very far to come. 

It is a word that I don’t use, because when we use the word behaviour, we focus on what’s on the surface. You get people trying to manage behaviours rather than the trying to understand what is wrong. Our focus should be on the happiness and well being of the autistic person and not on managing behaviour. And what happens to the person who has equal struggles, yet displays no ‘behaviours ‘!? 

Autistic children do turn into autistic adults. By invalidating their feelings and concentrating on strategies to help them control their reactions, what we are doing is creating so many inward mental health issues for the future. 

Recently, my son has not been able to attend school. Some people call this ‘school refusal’. Actually, it’s not that he refuses to go, but that he is not able to go, due to his difficulties. He is aware of his difficulties and has a great understanding of how autism impacts on him in different environments and he has a social understanding of what is going on around him. However, because of his understanding, he doesn’t display any typical ‘ behaviours’ and so because of this, his school didn’t believe me when I tried to explain his various struggles. 

You see, the acceptable and only intervention that school systems and professional services are able to offer is around ‘behavioural management ‘. So this means 2 things. 1. They try to reinforce ‘positive behaviour ‘ (while ignoring the needs of the person) or 2. They see no behaviours and so therefore ignore the individuals needs. 

It’s time we move past ‘behaviour ‘ and work with the individual on creating an understanding environment that, regardless of behaviour or presentation, that persons needs are met and accepted in a way that acknowledges how that person perceives and processes the world around them. 

Teaching your child about their diagnosis….

I see so many articles and one day courses on how to tell your child they have autism.  There have been many, from, teaching your child that they are different, to showing them the positives …. again, these approaches are from a non autistic perspective and don’t take into account context blindness or how theory of mind works from an autistic view. 

The dangers in ‘having a chat’ with your dd or ds is that they may not be able to apply what they have been told to themselves in the context of their daily life and in the contexts that will follow throughout their lives. In other words, teaching them about their diagnosis is a project, that is a journey of contexts and situations and revisiting events in a visual way in order to show them how they process the world. 

An example of this, I can recall my, now 9 year old, son loved mine craft. It was the only thing that motivated him (I’m sure we can all relate). So I used this as his visual to help him understand himself. We build a world together and in this world he built a giant creature which was him. Inside he had departments, his brain, hands, ears, mouth, nose, and eyes. In each department were files. We began with his likes and dislikes around his senses and he added them into the departments. Over time a clearer picture emerged. In his brain were floating words, which he said happens when people talk to him. He also added sounds and touches he liked and disliked.

This work in itself, never had to mention autism and I deliberately didn’t until a fuller picture emerged. You see, simply telling an autistic child just isn’t enough to create a big and comprehensive self image and by talking about things separately they find it very difficult to put it all together. 

After we had worked on this for a while, he came to me (he was 6 at the time) and said he didn’t want to go to school because his teacher wouldn’t be in. I reassured him and did ( as the professionals will advise) show him what would happen and usually they put him with another teacher with the same group of friends. But he was still upset. 

So we took out our image. And I pointed to the brain, where he had put in, that he didn’t like things changing and asked him if this was why he didn’t want to go. He scanned the image and eventually said, no and pointed to the ears. I thought maybe it was a noise issue. He shook his head. Then after a series of deductions he recognised that it was the teachers voice that hurt his ears. ( most likely the high pitch). 

In doing this I gave him options as to what he could do. 1. Scream and walk away, 2. Tell someone what was causing the issue, 3. I could write a note asking for him to be placed in another classroom. He chose 2 because he said his teacher would understand. 

It’s very important to note that in teaching him these skills and self advocacy is part of it, that disclosure becomes situational and in context. Neither does everything have to be explained by the word ‘autism’ as that seems to produce a typical image in people’s head. 

I would like to stress that the work I do has to be done on a continuous basis because as situations and context change, understanding doesn’t always follow. 

Sam x

Autism and independence

To get into this topic we have to ask ourselves, what is independence and how the process happens in non autistic people. 

Generally teenagers go through their process of growing up and all those extra cuticular activities and social meet ups art clubs, and hours in the football pitch help them gain the skills to becoming ‘who they are’ and ‘ finding their place in society ‘. Working on their emotional needs throughout their childhood gives them a sense of self and wellbeing.

Through that they learn the skills to navigate their world as an adult and choose their own path. They learn what they need to do to get by and what they are good at. A sense of belonging and an understanding of who they are comes from where they fit in in society and the emotional stability they were given as a child. 

Well, for autistic children this works the other way around. And what works for non autistic children doesn’t work for them. In fact it does the opposite l. Socialisation, emotional programmes and working on strengths hoping that these experiences will be internalised to form a sense of self and independence actually causes confusion and frustration among autistic people and this is why so many end up in mental health care or shut down from the rest of the world. 

What is the answer? Well this is quite a long one but I will explain in order and, of course, context.  But, to begin with, a sense of self has to be formed in order to socialise, an understanding ( in context) of how visual order, sensory input and how and what causes a meltdown need to be an ongoing program ( which I will show you how to do).

A social understanding rather than socialisation is needed. Emotion needs to be something we view in a different way and the concept of context blindness needs to be broken down. Behaviour is not a word I use or see as being a problem, but rather an indication of something that is causing the brain to malfunction. Autism is a hardware  issue not a software one.

So the happiness of the individual must always take precedence. In that, we can build a sense of understanding and with that comes choices of when and how people explain their difficulties to those who do not understand. They will learn that they are masking and can choose when and where this is necessary rather than feeling like they have to do it. 

In order to explain these things further, I will break it down into context and will show you the visuals I use to help explain to each of my children how their brain works and what they need to function. I will show you how they progress and what went well and what didn’t.

With each of them the approach was very different because of their ages, time of diagnosis and understanding. By doing this, hopefully, you will get to understand why, when we change our focus, that all we were trying to achieve will be achieved, just from the inside out 🙃

Where do I begin?

I am an autistic mother to 7 children. Our home is a place and a journey like no other. I don’t know where to begin…….

I will be writing of what is beyond diagnosis and beyond how society is still evolving it’s way from seeing autism as a pandemic to seeing it as a super power…neither of which is a balanced approach. I think our society has a long way to go towards having a balanced view of autism and hasn’t yet come into a phase of focusing on the happiness and wellbeing of the individuals. I believe my unique experience and understanding of how to achieve this may help those along their own journeys. I have gone through disordered eating to ‘mental health’ issues within my own life and that of my children’s and have found a way of developing individual tools to self understanding that has in itself  been key to setting up a home that functions in a very different way.

It’s a journey almost from the inside out, where my focus shifted and my home became a happier place where everyone has found and is finding their way to eating, sleeping and having a better more balanced self image that has in itself  taken care of how they interact and understand the world around them. 

My wish is that whoever will be reading my blogs will create a different way of approaching autism and autistic people so as to create an environment that promotes happiness and self understanding in order to enhance development and support. 

Samantha xxx