My Autism Journey & Lessons learnt!

I grew up in 1980s England and what society taught me then was the following. I was better than people who were poor but worse off than rich people, I was average.

The point is society puts us in a place, we are taught that there is a hierarchy.  What life has since taught me is this is rubbish. There are plenty of people who are classed by society as lower than me that are doing far more exceptional things than I am.  As far as I am concerned it’s all down to who a person is, not how they are classified.

Like many people my real aim for when I grew up was to get married, have kids and be happy.  Spoiler alert I have achieved the first two goals.  Goal number 3 is a little more complex.  Whilst I am happy and I truly have everything I need in life, emotions go up and down and it’s hard to be truly happy when your kids are struggling. 

I like to be in control but we all know life doesn’t allow us to be in control of everything and our emotional state is based on what is going on at a particular time. Happiness really is the journey of life and not a final destination.

My Journey

Today I want to write about my autism journey and tell you a little more about me. I am a natural conformer, I like to fit in and I’m not really that out of the ordinary.  I loved school and my favourite thing growing up was just hanging out with my friends.  I followed a typical path in life from university to a gap year travelling in Australia, then onto an office career and right now I’m a stay at home mum. 

When I was young I knew the word autism but I couldn’t give you a definition for it.  A friend lived next door to a home for people with learning disabilities and the shouts from those adults in the garden was really the only exposure I thought I had had to autism.  How wrong was I!

It is only now that I have a real understanding of autism that I see I have lived with and been around autistic people my entire life.  I just hadn’t labelled it properly.  In my mind those people were many things ‘friends, family members, quirky, different and unusual’. If I am being honest I would have also labelled some of those people at times as ‘weird’ but at other times seeing them as ‘creative and unique’. This is where the complexity of people comes in, we are all different things on different days. We all do and say things we regret and at the same time help people and do things we are extremely proud of.

We live in a society that classifies people, this is normal to most of us.  We also live in a world where we fear anything that is different or that we don’t understand.  For many of us we have been taught by society from a young age that different is wrong and it’s a good thing to be normal.  Weirdly we tell our typical kids to try and stand out but then tell the kids who stand out that they need to conform.  Life is full of complexities but the reality is we are all guilty of things we want to go back and change, but when we get new knowledge or experiences that teach us it is how we use that moving forward that really counts.

Finding out my son is autistic

Having a baby is hard, as a new parent I really had no clue what I was doing.  I had spent no time around babies and whilst I had read all the books and been on the parenting courses none of that really prepares you for the responsibility of being a parent.

Sleep deprivation was my first real struggle.  When all the other babies started to sleep through the night or go to bed easily I was still nowhere near any sort of sleep routine with my son.  This was my first real struggle but hey everyone talked about lack of sleep.  It wasn’t until later I realised our lack of sleeping was a bit more extreme and not typical for most parents!

When I was pregnant with number 2 everything got a bit harder, I was really struggling.  I feel like I’m a fairly competent person and that I shouldn’t have been finding life that hard.  I knew deep down something wasn’t as it was ‘supposed’ to be.

My eldest was now 18 months and wasn’t really interacting as friends’ kids were and he had no speech. So I went to see the Health Visitor and pleaded for some help before my next baby was due.  I knew I needed to focus on my son now because my attention would be on the new baby soon.

Thankfully this Health Visitor listened to me. When everyone else was just saying it’s normal for kids to develop at different rates and plenty of boys don’t speak until later and I was just being paranoid, she listened and offered help.

So we saw a Speech and Language therapist and I was sent on a course about parenting.  Autism was still not on my radar at all, the professionals we saw just kept referring to ‘social communication’ difficulties.  By the time the course started I now had a new-born baby I had to bring with me. I am forever grateful for the wonderful speaker at one session who held my grizzly new born while giving that speech and actually thanked me for letting her hold him!

At this point I was an emotional wreck. I knew the professionals were hinting that something was ‘wrong’ with my child and with no sleep my husband was getting the brunt of my stress. We were then referred for support from the complex needs speech and language team.

It was at a playgroup at the children’s centre which was for children struggling with speech and language that the term ‘autism’ finally came up. One of the ladies that had been working with us for a while asked me if I knew what they meant by ‘social communication difficulties’ I didn’t. She then told me that it was probably ‘autism’ and that is what the professionals were assessing my son for. 

What is autism?

I was in shock and realised that I had no real idea what autism was. At that time what I did know was that autism was a bad thing! 

At this point I was really struggling with my son we were not interacting as I expected.  This was also the time he was going through his biting stage at nursery and I felt like I was totally failing him!  Then I had all sorts of dark thoughts about what autism meant – is my son going to be violent and never speak to me!

Why did I fear autism?

I now see how insulting it is to say I was grieving and in a bad place about receiving an autism diagnosis but the reality is that is how I felt.  This is a very common place for parents receiving a diagnosis.  Yes it is totally ridiculous but it is founded in a real lack of understanding about autism and having grown up in a society that labelled autism as a bad thing. 

I’m not going to go into the history of autism but there are many adults in homes today who were institutionalised at a very young age simply for being different.  And mainly because they didn’t fit into what was seen as acceptable behaviour by society. If you do want to learn about the history of autism I really recommend Neurotribes by Steve Silberman.

Our society is based around conformity-that doesn’t make it right.  History is filled with appalling treatment of people simply for being different, be that race, nationality, gender or sexuality.  Thankfully we are beginning to move forward in society and understand that this is wrong and hateful and actually utterly ridiculous.  We are all different- even twins are different people- so when no two people are the same why do we fear difference. 

I’m not sure who created this info-graphic but its one of my favourites:

Well many of us fear not fitting in, even when we see that someone is being mistreated we sometimes stand back not wanting to become the target ourselves.  This is a natural behaviour we see it in the playground from a really young age.  Again thankfully we are moving on as a society and many of us are teaching our kids to care for others and to stand up against any hate / mistreatment. Having said that there is a long way to go and cultural change still needs to shift significantly.

Ableism

I had little exposure to disability until my 20s and honestly gave it very little thought.  I then had a colleague with a disability and saw a bit more and understood a little about ableism.

Ableism: is the discrimination or prejudice against people who have disabilities.

The fact that ableism isn’t even a word that most people use really highlights how far away we are from including disabled people in society.  We are all familiar with racism, sexism even ageism but ableism is just accepted as a part of life to the point that many people don’t even label it. 

My eldest son was diagnosed with autism 3 years ago now.  Over those three years I have learnt so much about disabilities, through my son’s nurseries and schools, the professionals he has worked with and meeting other parents.  Working with Bristol Autism Network and my blog has exposed me to so much more.  I could tell you stories all day about mistreatment, cruelty and just pure hatred that many people with disabilities live with on a daily basis.  The worst thing about it is how oblivious I was to this for the first 25 years of my life and if my son wasn’t autistic I would probably still be pretty oblivious to it.

The thing about ableism is I’m not just talking about people being cruel, it’s the ignorance that is a huge element.  Just last month I asked 5 times (at first with 3 weeks’ notice) for picture of our new driver for my son’s transport, this is an easy reasonable adjustment that he needs.  He is non-verbal and needs visuals so that we can communicate in a way he understands.  I know that the reason no one provided it is down to a lack of understanding but that doesn’t really make it ok.

This quote from Judy Endow is great way to highlight the need to make accommodations when asked.

Back to autism

There are so many times in my life that someone’s behaviour has annoyed me and I have just been frustrated with them.  The problem is I just saw what was happening and didn’t fully understand that all behaviour is communication.  I was focused on why someone was rude to me or why they were being difficult. Life and relationships have become so much easier for me now that I am more able to step back and see why people behave the way they do. Ok they are being rude, are they are really stressed about something, what is it, now I have listened I can see the problem, oh and I can actually help with that!!

Whilst I now regret thoughts I have had in the past, I didn’t know better. Whilst that doesn’t excuse it, I can do better moving forward.  I understand why people don’t get what my life is like, they are not living it, this is the same reason I can’t understand their life completely.  However I can be better at listening and accepting what others have to say.

After my son was diagnosed I came across the poem ‘welcome to Holland’ at the time it really resonated with me. 

It taught me a valuable lesson and gave me that lightbulb moment.  It was the moment I learnt that being different is absolutely fine and it isn’t wrong to be different it is simply different. Being a conformist means that standing out, being the odd one out is scary for me but I am now totally sold on difference and that fact that life is so much better when you truly see a person and not what they are wearing, how they sound or how they behave.

Different not less

Becoming a parent is hard for everyone and changes us dramatically. Being a parent to an autistic child is just another avenue in life.  It breaks my heart that the world sees autism as a bad thing.  It truly isn’t- there are so many amazing things about autism. Autism is simply a different way to see and approach the world.  It’s not wrong it’s just different.  It’s not weird, it’s just different. Society is not set up for people who are different (round peg square hole) and as such autistic people struggle to exist in a society that is not built for them. Just imagine how hard that is.

I need change to happen, I need the world to understand how much ableism goes on every day.  I need the government to realise that the education system is massively failing children with additional needs and disabilities.  I need this to happen now because I need my son to grow up in a society that accepts him for who he is and doesn’t damage him with a lifetime of being told he is wrong.