DISCLAIMER! As I feel it’s necessary to hear.. I am in no way claiming to be a professional of any kind, in any way when it comes to offering advice, guidance whilst talking about these sensitive topics.
My only hope for this post is that it can help bring much-essential awareness to a topic that still seems to appear very taboo..
That being said, I’ve wanted to talk about this for quite some time, as it’s something we’re living with, and I also hold extremely close to my heart.
Autism affects more people/children in the world than we could ever possibly begin to imagine. So let’s try to understand it and normalise it.
So, “stick on a brew” and prepare yourselves for how long this post may turn out to be – I don’t want to miss out a thing! My wish is for this post to become as detailed as possible, as well as informative in order to help any mums/parents out there who’s children/relatives may also be going through something like this.
What is Autism?
Just before I get into the necessary “jargon”, I want to explain that I personally DO NOT see autism as a disability or illness in any way, shape or form.
It is not caused.
It is merely a condition where social skills involving others can appear very challenging to people who are on the autistic spectrum. The brain appears to work in (commonly) repetitive ways, therefore can affect how an autistic person communicates and interacts with others. It’s a neurological social misfire. Nothing more.
Medically, there is no evidence for a cure.
And EVERY single Autistic person has the ability to achieve their full potential in the world, just like everybody else.
Having had a history of mental health running throughout my family for many decades – dating back to my great-great-great-great-great… Well, you get the picture.. Proves that (in my case) Autism can be primarily inherited through a strong genetic basis…
How does Autism affect a child?
Well, from my point of view, and in Jacob’s case..
As an early parent, I had always suspected from a social perspective that Jacob was just a little bit different. Different to other kids I mean!
“Whenever” he went to daycare – Only a fair few times I’m afraid, as that stuffs expensive! Like normal kids would like to play and interact with other children, Jacob just didn’t. We would drop him off, and just as most children do the “crying to be in mummy’s arms but then eventually letting go through being enticed/distracted by whatever fun the paid adult was showing them” Jacob just didn’t let go, he made it obviously clear that he didn’t want to go and play with other children who were around his age.
He had always prefered to be around adults, and to play with them – he was happy to do so!
Needless to say, the daycare visits were very few and far between..
That being said, it never really came across as being an issue while he was young, I actually found it quite endearing, as it meant that he was extremely clingy and loving. A mothers dream!
Fast forward a few years, to the age of starting primary school – supposedly, one of the most exciting times in a young person’s life!
From the get-go, his transition into school was very difficult. He had to make way for this whole new experience, and although he was excited about a little change – new shoes, uniform, bag, water bottle etc. It was causing disruption to his “usual” routine so, the expectation of what he was about to face/do was so different from the actual reality.
Autism can affect a child’s learning and development in different ways making it incredibly difficult for an autistic person to engage with others and make friends. It can involve difficulty concerning but not limited to; focus, attention, changes, memory, emotional control, also the struggle to pick up on social cues – and can often instead be seen as behaving troublesome, or being a naughty child.
So, when it came to Jacob first starting his new school, he found it incredibly difficult after meeting new children in the class to interact, socialise and share a room with them. It was difficult for his teachers to distinguish between his spoken language and social communication deficits. Meaning that Jacob found it difficult to play with and befriend his new school peers.
Though we are neurotypically forced as a society to encourage our children to socialise and interact with others, it is often suggested that this isn’t the best practice, as it can be seen as being incredibly confusing to an autistic person. Overall, the condition itself can see autistic people feeling very misunderstood in nearly every given situation, as well as lonely, as empathy for others is still very much present, but the interest is not when it comes to pleasing others.
How do you know what to look for/the signs?
Now, it’s incredibly difficult to pin-point an autistic child’s social trigger – as you’ve read above, there are so many and children, in general, are so very different – there’s no “one size fits all” explanation. Some children prefer to keep themselves to themselves (introvert) as any changes made could warrant as a trigger. Whereas children, like Jacob (extrovert) would instantly act out towards others who tried to emotionally involve them on their level, failing to cope with (again) the change..
You’ll find that change, in its many forms is usually the trigger..
Months after being called to attend many “after school meetings” with teachers due to obvious disruptions made in class, and overall concerning behaviour, it was finally agreed that Jacob would be monitored as well as tested on a social level with an assigned key worker; who would compose a characterized, personal plan to see if there was anything underlying that we as parents and teachers could both work towards and be involved with in order to help him to live his full, entitled happy life.
Though the more apparent change primarily stems from his school experiences, this isn’t always the case. Jacob will also act out at home too.
Experiences have taught us to be aware of any signals, and signs of potential triggers.
“Jacob’s triggers” include but are not limited to;
Sucking on skin/clothes – in extreme desperation for comfort, (just as from the previous baby stage) Jacob still manages to suck on an item of clothing; the collar/hem of tops, or sleeves of his shirt.
It’s also unfortunately not uncommon for him to cause bodily harm to himself through sucking on his skin to the point it causes bruises beneath the surface of his skin – This has happened on numerous occasions, and if you ever notice your child acting out in this behaviour then you MUST inform their school in order to avoid unnecessary blame and rather nasty insinuations..
Discovering themselves – The way to learn is through doing, and an autistic child is very intuitive. It can be a very motivating and inspiring quality. However, just like the positive, it also has it’s drawbacks.
There have been many times that I have found Jacob with his hands firmly thrust down the back of his trousers, no matter how many times he has been told off about this, or prompted to go to the toilet. This is a daily occurrence and Jacob is currently under the Nottingham children’s continence clinic for this.
Alarming behaviour to gain attention – Attention-seeking behaviour is another autistic trait. There have been several, longing nights when Jacob is put to bed, that he makes it very apparent that he cannot stand, nor grasp the idea of his father and I still being allowed to occupy downstairs while he is in bed.
He still to this day cannot understand why therefore will often cause some type of disturbance in order to disrupt this “obvious” routine to put the attention back on him. Remember to an autistic child, any attention – be that good or bad – is still attention.
Outbursts of bad behaviour when being praised – An autistic child can only process so much emotion at once. They don’t crave praise. And generally only want it when a physical/financial reward is present.
So, when it came to regularly and rightfully giving Jacob verbal praise for either doing well at school or just complimenting him for being a good boy in general, Jacob would often act out or behave entirely opposite to the reason he is being praised for in an attempt to eventually put himself in the “wrong”, resulting in a consequence.
I overcame this by using only “nonverbal praise”, either with a hug or a high-five.
FINALLY! Though many (many) tears, tantrums and overall struggle to be expected in a Covid-ridden world, Jacob is now going through a service called;
“Small Steps is a service providing early support and evidence-based interventions to families of children and young people displaying behaviours that cause concern or challenge.
Support will be available where there is no formal diagnosis of ASD or ADHD, but where behaviours maybe indicative or characteristic of these conditions and also for families of children and young people diagnosed with ASD and/or ADHD.”
Trust me, it does get better.
Jacob now being on the metaphorical “radar” will allow him much-necessary access to the “one-on-one” support he so desperately needs in order to help him live a full and happy life.
Although it feels like a long journey ahead, I truly believe that by going through the necessary steps above, and raising awareness amongst health professionals, we have now enabled Jacob’s world to open up further allowing him to enjoy the journey so much more, as he’s no longer looked down on as “being a naughty child” which, unfortunately, most undiagnosed cases are.
You should not at any point feel as though this is somehow caused by something you are doing wrong, unresearched or yielding. It’s not as “whispered” as it once was, and there is now help available to those who need it. Don’t be frightened to use it. Be the change your child needs.
You love your children unconditionally and will do anything to protect them from anything that gets in the way of them having a happy and wonderful life.
If you can relate to the above, please remember to seek the necessary help that your child is entitled to. If you raise awareness from an earlier age then not only will you be educated enough to deal with the inevitable, but you’ll also be on the rightful path to significantly improve your children’s life for the better.
It just takes that one step in the right direction.
For more information, please search further, “professional” advice – https://www.nhs.uk/conditions/autism/
I sincerely hope this has helped at least one family member who maybe felt as though their situation was especially unique. Feel free to go ahead and chat with me about it if you want to!