Safety

So many thoughts this evening, and no idea where to start.

My eldest is still loving school but he is struggling with his sensory needs. He keeps squeezing into tight spaces and every day he has a new injury from being so clumsy.

As I’ve mentioned before, I have been called fussy on many occasions but everybody is now seeing why I simply have to be. I work hard to keep my children safe because they do not possess the ability to do this themselves. We consistently teach them about dangers and how to do things safely, but much of the time, compulsions take over. I cannot become complacent because bad things will happen.

One of the things people have openly scoffed at is my concern over stairs. My children can use stairs confidently, and have done from very young. However, I am still very strict about them. I do not allow the children to go up and down them without supervision and can’t understand why more people don’t give them the respect they deserve. As an adult, I have fallen down them and suffered with concussion, so I do not take them lightly.

Earlier this week, my eldest fell down the stairs. My husband saw the whole thing and was quite upset as my eldest actually did a roly poly before landing at the bottom of the flight. I was hysterical as I came running out to see my son lying on the floor, crying and holding his head. I was so worried about his neck and head. The reality is, this could have resulted in something a lot worse than, thankfully, it did.

This happened on my husband’s watch…and the most annoying thing is he was being very vigilant. We usually walk down the stairs before the children, but my eldest had stepped in front of my husband, through impatience. He was carrying a water bottle or toy and my husband removed this from him explaining, as we always do daily, that they should never carry things up or down the stairs. Despite this, he somehow tripped and fell.

Today, my eldest came home with some horrible injuries, sustained at play time. Nobody saw what happened, and he will not talk about it. I understand accidents happen, but he has so many it’s crazy.

Have things happened on my watch? Of course. Have there been near misses? Of course. But on the most part, I understand and respect his triggers and unpredictability, so I am ‘on’ all the time. What happened today would be a more common experience if I wasn’t so on the ball…but that in itself is tiring.

I am also really ‘fussy’ about doors and car doors…fingers and toes. I can’t discuss it but I had a horrific experience as a child, during a game of hide and seek. I hid behind a door…my brother slammed it open…I can’t say any more.

As a result, I am quite strict and obsessive about not playing with doors, standing behind them or putting fingers near the edges. What makes me feel sick is that all it takes is for somebody to lapse for a moment, and for somebody else to accidentally, not thinking, slam a door…for permanent damage to be done.

I can’t bear it!

My niece is very accident prone and requires constant attention. People scoff at this, but she needs to be watched all the time. She clearly has ADHD and I believe she is also on the spectrum, mainly just because she reminds me of myself as a child. My mum always said that she feels I should have been diagnosed with ADHD as a child, but it wasn’t all that common then. Although, I recently learned that a school friend of mine was diagnosed as a child. How I did not know that is beyond me. However, I did always know there was something different about her. I guess that’s partly what drew us together.

It sometimes feels like people believe that outing your child as SEN is an ‘excuse’ for poor parenting. When in fact, it is an attempt to promote understanding.

Female Autism

I’ve had a glass of wine…and this is a long one…

I need more time to focus on a very important subject matter…female autism!!!

But after a discussion online today, I wanted to share a few things before I get the time I need to really do the subject justice.

There is so much literature out there and of course much of it conflicts. Read as much as you can!

We are living in an exciting time where more information is becoming available. Sadly, people, including professionals, are still working on out of date criteria and myths about autism!

Obviously autism is a spectrum and I am not claiming that there are not overlaps between individuals and genders. But, there is enough evidence to show clear differences between male and female autism/Asperger’s.

Today I came across a mother on a parents of SEN children support group who was describing her daughter’s behaviours. These included hand flapping, excited noises, being overly social, singing all the time, talking a lot, getting on better with boys than girls, not really fitting in, playing alone despite trying to interact, having only one or two friends…

I recognised immediately that this girl was autistic. The reason I recognised this is because this was me as a child. These are just a few of the behaviours…barely the tip of the iceberg.

The mother said that the paediatrician had dismissed any concerns that this child was autistic because she could socialise and make eye contact.

As the day has progressed, this has made me feel so many emotions. Sad, angry, infuriated, hurt, incentivised…

I wish there was some way I could focus on helping people understand autism and more specifically, female autism.

I am not diagnosed yet but I know who I am. People have told me for years that I can’t be autistic because I can socialise and make eye contact. They invalidate the struggles I have faced. I spent a lifetime feeling left out and isolated despite playing by all the rules. So I could fit in, I spent hours trying to teach myself how to be interested in some of the things other children around me talked about. I trained myself to make eye contact. I tried to be everything that wasn’t natural to me. I spent many hours crying when people didn’t understand me.

I feel so grateful to have had my mum who talked me through why other people said and did the things they did. And helped me understand what things made me stand out for all the wrong reasons.

I used to hyperfocus on whatever I was interested in and spent time, up until my late teens, recording songs, playing on my keyboard, making videos etc while all of my friends were out drinking. When my auntie taught me how to knit, I didn’t think twice about taking it into school to complete during play time the next day. The other kids were mean! I couldn’t see why! There are so many incidents I could share right now as I go through spells/loops where all of these failed interactions and facial expressions haunt me. What these interactions taught me at the time was that something I did was wrong. So even if I didn’t quite understand what I had done…I knew I had to use a trial and error approach until I was accepted.

The other problem with being autistic is that even when you learn lots of strategies, the awkwardness and uncertainty doesn’t stay behind in childhood…it follows you into adulthood. As a young woman I was extremely rule driven, very black and white, and used to offend people with my opinions without even trying. I have always conducted a lot of research and find comfort in facts! Since the General Election I have realised, in my 30s, that this is not something society can handle.

Another issue is bullying. I was bullied at school, by family members, by different workplaces…and I could not work out why. For some reason, there was just something about me that people targeted. At one workplace I was told that they believed I was trying to make my colleagues look bad by performing so well. Another colleague from another workplace actually told me (when we first realised I was most likely on the spectrum) that she found this to be a relief as she thought I was trying to stand out to the Headteacher and apparently the staff had discussed me in the staffroom. She said that me being autistic made so much sense and made her feel better.

What they didn’t realise is that as an autistic person, I am a perfectionist and I hyperfocus on tasks until I have achieved what I want to achieve. I have always lived in my own little world, competing only with myself and my own expectations…yet I was perceived as having ulterior motives that were less than pure. I was accused of saying or meaning things that I would never say or mean. All I can put it down to is that many women have underlying meanings when they say or do things. With me, what you see really is what you get, but it seems that people find this hard to believe. I have always been quite naïve and I think this was part of the problem. Very often people would manipulate me into saying or doing things and on more than one occasion, words were definitely put into my mouth. These days, I keep my circle small and trust very few. It’s a shame, but it’s an easier way to live.

My mum always said that I wore my heart on my sleeve and gave too much away about myself. She used to say that it hurt her to see how pure I was and how people took advantage of that. Another autistic trait. She also used to say that I only ever saw the best in people, and I was so proud of that.

I think this is why I connect with children so well. There are no hidden agendas and codes to deconstruct. I find them so easy to work out and to work with.

Autism is not a mental health condition but it causes mental health issues for sure. When I was a teenager I considered ending my life…and that wasn’t a cry for attention. If it wasn’t for my mum having her wits about her and intervening, I would have absolutely been another statistic.

As I have said before, trust your instincts. If you suspect a female in your circle is autistic, research, research and research. They will need you to be their friend, support and teacher, with or without a diagnosis.

This is one of very few times I have openly talked about identifying as autistic because to be honest, most people dismiss it as soon as I mention it. Without a piece of paper from a professional (probably a neurotypical) who is attempting to diagnose from out of date criteria, people don’t take you seriously. Sadly, people are ignorant and don’t attempt to educate themselves before expressing their opinions. I’m sorry if that sounds harsh, but it’s true.

I recently told some family members that I was going for my diagnosis and they looked baffled.

“Why?”

Well, I didn’t answer because to ask that question, they clearly don’t get it.

This is who I am. This is my identity. And now my children are going through the process, I feel it is the right time.

I also think it is really important to stand up and show the world that there are more female autistics than we have been led to believe. Here we are blending into the background, pretending to fit in, when in fact we don’t.

People talk about autism in such a negative light. I want to show that we are intelligent, loving, kind, sensitive, empathetical and successful! Some autistics struggle more than others…but it’s not like that for all of us.

I am proud to think the way I do and although it has brought me pain, it has made me who I am today.

Empathy

For those people who think that autistic people can’t be empathetic…

Yesterday we bumped into one of my mum’s friends. She gave the children £1 each. We went to the shop to spend the money but upon learning that the man outside selling The Big Issue was homeless, he handed over his pound with a huge smile on his face.

I explained his pound was now gone and he couldn’t buy anything with it, then asked him why he gave his pound to the gentleman. He replied, “So he can buy a new house!”

He was so happy. And I felt so proud.

He has obviously been taught compassion, empathy and kindness, as any child should, but so many people have the misconception that ASD children lack these qualities.

All people are different, and this is all he has known. He is so loving, sensitive and affectionate! And just beautiful inside and out! 😍🥰

Ying & Yang

I am so happy with the school my son is at. It’s only early days, I know, but so far they really seem to get him.

He looks forward to going in and although he is obviously having a few challenges, they have already set up a safe space for him to go to etc.

I was about to explain something to his teacher this morning and before I’d completed my sentence, she finished it with the same thoughts!

You can see they really do treat the children as individuals and try to get to know them as people.

In other news, my youngest is not coping well with his big brother going to big school. Today is the first day he didn’t get upset when we left him.

We attended a toddler group, but when we reached the end of the session (tidying up/transitions), he struggled to cope and had a huge tantrum. I took him outside and brought him back once he had calmed. We did this once more but the third time the tantrum escalated so I had to put him in his stroller.

I could not physically strap him in so thankfully a lovely mum from the group helped me. She was so calm and reassuring. I haven’t come across many people who offer help so I was a little overwhelmed. What a lovely person!

We had to walk past a coffee area full of older people. Most people smiled and gave understanding faces but some of the older people pulled a very different face, clearly thinking my child is a brat and I am a terrible mother.

I am learning to filter this out and focus on the positive as most people were friendly.

Today was most definitely a tantrum. He was hungry, tired and unhappy with the transition. Last week he coped just fine…but today was clearly a different day.

I gave him his comforter once we got outside and he calmed down immediately. He then spoke to me about what he had done when we got home and has been as good as gold.

I was reluctant to take him to the group today as his behaviour has been tricky this week. However, I thought I needed to give it a try! I’m sure some of the other parents would have preferred it if I had stayed at home!

We can always try again next week…

If they all run out of the door when we arrive, I will quite understand!

😂🤦‍♀️

Tantrum or Meltdown?

Oh my gosh, yes. Please read.

Meltdowns are not the same as tantrums!

What this doesn’t address is how tantrums can sometimes trigger or turn into a meltdown. You deal with the tantrum but it then escalates
beyond all control, so it’s likely that other factors such as sensory overload have come into play.

Tantrums need to be dealt with as with any child. Parents with autistic children certainly know the difference, but it’s not always easy for other people to identify, which is understandable.

https://l.facebook.com/l.php?u=https%3A%2F%2Fautismawarenesscentre.com%2Fwhat-is-the-difference-between-a-tantrum-and-an-autistic-meltdown%2F%3Ffbclid%3DIwAR1DusTF0UtFfFD4g7XDk5x8mM-VDUelVCvHz0jnPB_fqGh57R6QsedmTik&h=AT3ukCX3OuiM0SGqywnqmXhyhfhL9B2QaRENApjdhfGwE7-LzlAoZu6tbV84ivfFnoojtHOmhkS6E58U9GpBDGx0mPUcFVy_YaYutJt-7nKxx_1iKOPWNqKysbEaUC9Nrg2CFE5q9I8JRB3fGyUfgrPA1ulQVXs-50H16qZT-9yhmkpZLfGH_PRs2-diq-LNdGTiNmyoJYev2oUSNYWiQgCtm9lxIveSnnhihU03DnfZLFel1au0sbSEme4lT1Fgmb6eNXpAYD8KRrTPMzr2KHAKjnXA-TP9VuR8xiBckszo2mSmTjx3wnVEAYF8qLjhUH0LMNqmKJLgNP1HEiDKMbYL7R7DIs8ssppg_ZPVFIh1XAd3c-98Bxy3lmV_POzyyPDu8Gho7I_bh4kH0h0OTHvn8Bl9eHw7GybHc56CCxDzRZztjU9079z5-OXbu49zqUbZYpgc61v6rQnDSHuYFmCgvtJYfwZ83SXKUZF3DwFmcFsnubRDrzy9sNgfRIMeqbgLwZP5qCB3yQrArUD3G14v3N2m_NFxu_tu12X3FRf_UTw92GJBE6XhuKnX8J_E0NPdZJEsQrSy_Ar7WrK-B7ep4rKRWz3X3Sjf0AHcv_zvXiqA3p3z_0iS02Di

What is autism?

So what is autism?

The National Autistic Society has explained it here: https://www.autism.org.uk/about/what-is/asd.aspx

For me, autism is different neurological wiring to that of a typical, or should I say neurotypical person.

Some people speak about autism as though it is an illness and that somehow autism makes an individual inferior.

Autism can bring with it complications when trying to fit in to a mostly neurotypical world, but this just begs the question whether maybe the world around us needs to change to accommodate neurodiversity. This way, everybody can thrive.

There have also been links to particular illnesses and autism, but we can explore this in a future post.

Children with all kinds of SEN, including autism, tend to struggle to ‘fit in’ seamlessly to the school system, but again I have to question whether the problem here is that the system needs an overhaul rather than suggesting that these children are the problem. This is something else I would like to explore in another post. If the curriculum and school environment were to change, would we need the same interventions for SEN children? I can hear people screaming ‘funding’ at me, but our current system doesn’t appear to be working all that well.

I’ve been told that so many children are being flagged up with additional needs, that the workload for professionals involved in diagnosis are overwhelmed, and naturally funding is an issue when trying to organise support.

Do we have to provide support for every individual or can we try a new approach to accommodate everybody at the same time?

I would also like to explore the diagnosis process in a future post, but for now I will say that the process is long, and there are so many children not qualifying for the help they so sorely need and deserve.

It’s a shame that people focus on the negatives as there are also lots of benefits to being autistic. I think the media has played a huge part in this, but again I will revisit this in a future post.

The ability to hyperfocus on areas of interest and obsess over everything they do, can make autistic people very knowledgeable and efficient in any task or line of work undertaken.

I was asked whether I was worried that my children may be autistic. My concern was about their experience growing up and how they would be perceived by others. I was worried how they would fit in at school and how life would be a little trickier for me as a parent.

However, the children being autistic didn’t concern me. I am confident that long term, I can teach the children the tools they need to function in this world, and I believe that with the right support they will be fully functional, well balanced and successful adults. The main challenges, I believe, are going to be experienced through childhood. And I am not looking forward to their teenage years, but what parent does?

It was believed that there are three types of autism.

Now, however, it is just referred to as ASD (Autism Spectrum Disorder…I still have some issues with the terms that make autism sound like a disorder or illness).

My understanding for this change in terms is that people were trying to define autism in terms of low functionIng and high functioning…like it is black, white and linear.

It was assumed that non verbal autistics were ‘low functioning’. I read a story about an autistic person who was non verbal and therefore treated like a child. They were read children’s books and spoken to in simple terms. With recent technological advances, this person was given equipment through which they could communicate, and it became obvious very quickly that this person was extremely intelligent.

How awful must that have been, to have had thoughts in your head that you couldn’t get out…to understand completely what people were saying but having no way to communicate…to be read children’s stories when you really wanted to get your hands on a novel?

There is so much more to say but my youngest is having a huge meltdown because Daddy has gone to work so I must dash.

Going Out

When we go out, we always have to find autism friendly times. Either at the crack of dawn or when other people are going home.

We have to think carefully about where we go as the children aren’t great in crowds or confined spaces.

Naturally, we do expose them to these situations but it has to be carefully planned and thought about.

It is 9:15 as I am writing this, and we are racking our brains thinking about what to do with the day.

We still aren’t ready, which is not like us, but that means by the time we are, we will be going out at the same time as lots of other people.

To make our outing successful, we can’t go somewhere busy or loud, as my eldest will get overwhelmed.

What to do…

Celebrating the Positive

I believe strongly in balance and celebrating the positive. Yesterday I was feeling extremely run down and was a little anxious about what the day had in store for me.

The children picked up on my vulnerability and rather than exploiting it, which has happened on occasion, they were very sweet.

My eldest in particular was very cuddly and said, “Don’t worry, Mummy, I’ll take care of you.” He doesn’t always pick up on my emotions but when he does, he always gives me cuddles and kisses.

We had a very sedentary day, snuggling on the couch and watching movies.

I try to limit screen time as I’ve noticed that this can overstimulate the children. My eldest tends to stim and tic a lot more than usual when exposed to screens or when he’s tired.

However, some days it can’t be avoided.

This got me thinking about the misconception that autistic people have no empathy.

Admittedly, my eldest needs very obvious clues to identify how I am feeling, and is not very in tune with people outside of the family, but he’s such a sensitive boy who is very loving and affectionate. This shocks a lot of people!

One of the paediatricians we visited said that sadly the criteria was a little out of date and that it needed to move with the times.

We now realise that ASD is a spectrum, not in a linear fashion, and that no two autistic people are the same, despite sharing similar traits.

This is something I will address in more detail in a future post.

What is autism? Is everyone a little bit autistic?

Are autistic people empathetical?