Struggling

So, I’m not going to lie…I am struggling this evening!

Horrendous weekend, behaviour wise. I can’t tell you why… all I can tell you is that after a pretty good spell with my eldest, he is clearly not coping.

It could be down to a number of things.

We have had, from one or both children: refusing to sit at the table, refusing food, blowing raspberries, spinning, dumping toys, crashing toys, being rough, trying to jump on beds/couch, dangerous behaviour, shouting when not getting their own way, screaming, meltdowns, hitting, self-harm, headbutting, avoidance, baby talk, rolling on the floor, impatience, trying to play on stairs, taking things from the fridge/freezer without asking, trying to wander off elsewhere in the house to do gosh knows what…the list goes on!

I have tried to deal with the behaviours as I always do but for the last three days, nothing seems to be working.

My eldest seems extremely anxious.

I have been doing lots of reading, as always, and have reached out to parents of SPD children. I was referred to a link which was initially suggested to help me with my youngest…but it is in fact my eldest. I am going to share this link in another post. It discusses PDA.

My eldest has an issue with getting wet, despite being obsessed with water…and I mean obsessed!

It was raining when I collected him. He had a huge meltdown…refused to walk and didn’t want to go in the pram because water was dripping from the cover. He wanted me to carry him home. I explained that I could not and gave him the option of pram or walking. I had to dry the pram in every area he perceived to be wet, or discoloured. We managed a few steps before he scraped his feet on the ground, making it impossible to push the pram. He tried to climb out of the pram and got stuck, which upset him greatly. When I took him out to walk, he wouldn’t put his feet to the ground because it was wet. He hung from me and almost knocked me over.

Then, some raindrops wet his trousers. Rather than stripping off, like he usually does, he had a huge meltdown…screaming, crying and pleading with me to take the wet away.

We discussed the purpose of shoes. I showed him the raindrops on my leggings and the bottom of my shoes. Nothing worked. He tried to climb me and I nearly dropped him onto the ground.

I pretended to dry the patches…and we discussed how they would dry…and that we could dry everything at home.

I lifted him up, kissed and cuddled him, and after some time and effort, managed to convince him to walk with me, pushing the pram. We had to keep pausing to discuss the rain and he kept crying about being wet.

“Please take me in the car next time, Mummy!”
“I’m afraid I can’t!”

His face showed real pain and tears were streaming down his red, patchy cheeks. I feel so torn between conflicting emotions…feeling frustrated and inconvenienced…also feeling so sorry for this little soul who cannot control his emotions and reactions. Ninety nine percent of the time, his needs outweigh my own and I take a deep breath, push aside my feelings and try everything I can possibly think of to make him feel happier. I wish he didn’t have to go through this all the time…that we didn’t have to experience this all the time.

Once we were home, I started dinner. Once we sat down to eat, another meltdown commenced. This time, the other child jumped on the bandwagon. I got hit in the face! My eldest has a talent for always striking the same place, every time! We removed them both, placing them somewhere safe, and just stared at each other…exhausted and exasperated. My husband asked, “What have we done to deserve this? Daily! We give them so much love. We try so hard to meet all of their needs. Having special children is hard…and I’m worn!”

At least we have each other. Although, it does cause tension at times, it’s nice to have that other human being who gets it…really gets it! Who lives it!

As I write this, the children are playing beautifully. Calm after the storm. Oh…spoke too soon…

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! 😍🥰

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

Can Autism be Cured?


I find this article so insulting. Autism cannot be, and does not need to be, cured!

Yes, being autistic can present in a million different ways, and some autistic people will struggle more than others. But generally I think there is huge ignorance surrounding it. The media have a lot to answer for here!

We were once asked if the life expectancy was good for somebody with autism!

I should hope so. Being a little more sensitive to the world and thinking differently isn’t an illness. Despite it so wrongfully being considered a mental health problem for so long.

I believe it was Tony Attwood that said, “I don’t suffer from autism. I suffer from other people!” I will need to double check this, but it’s so true.

The other expression I remember but need to check who said it is being autistic is like trying to shove a circle through a square hole…or something like that. It’s so true!

I haven’t mentioned it here before but I myself identify as autistic. In fact, I was once referred to be diagnosed but I did not pursue the diagnosis. This was wholly due to the ignorance surrounding it.

I always knew I was different, everybody did, but we could not put our finger on why.

I tried so hard to mimic everybody else and fit in, but I just couldn’t. There is much to say about my own experience, so I will be discussing this in future.

I am currently waiting for a new referral.

I posted an article a while ago about PTSD from having autistic children. I believe this also exists from growing up in the world as an autistic person.

The female experience is different to that of male autism, in some ways. Women are talented mimics and maskers. I have had more people than you know scoff at my claims that I am autistic. I have spent years training myself to make eye contact and perform well at social events.

What people don’t see is the social exhaustion afterwards. It zaps all of my energy. But all people see is me coming across as very outgoing and overly chatty.

I am excited to discuss female autism more as it is an area that is underdiagnosed and misunderstood.

I taught a clearly autistic girl who was just like me!!!!! An Ed Psych was watching her, and the more we talked, she said she felt I was on the spectrum too. I dismissed it to begin with but then the autistic trait of hyperfocus came into play and I read SO much. It was undeniable.

I finally understood. I finally had an answer. They call it the glass wall. I cried for a week as I grieved over all of the experiences I had been through, that I realised were not my fault. That I realised could have been different if only we’d known and put interventions in place.

Autistic people are your teachers, your nurses…we are empathetical…in fact I am an empath…but that’s for another day. It’s hard being an empath as you feel so extremely and it’s not something you can easily train yourself out of. I genuinely feel other people’s pain! If someone hurts themselves, my whole body almost feels it and I overreact or cry. I can’t help it!

So, my relationship with, and passion for, autism is a very personal one!!!

https://news.sky.com/story/amp/ad-watchdog-orders-150-autism-cure-therapists-to-stop-11672357?fbclid=IwAR1kt8-V_J8aYghOc38VSK3d2-peSZgk2_-FKvo82wA8zFUDCU0HWZlU0-E

Triggers

…and things not going as expected, transitions, fixating on things and having to let them go/not being able to access them… etc etc