Today marks the start of Autism Awareness Week. As many of you who follow my blog, Twitter, Facebook and Instagram accounts will know by now, I have 3 children under 6, the middle one who is autistic.
After his diagnosis 2 years ago it become evident to me that autism is an area along with many “invisible disabilities” that need more awareness and people to understand the effects of autism not just on the person with autism but also all those living with that person e.g. parents, carers and siblings.
On our journey as a family I have been overwhelmed with the amount of support I have received from friends, family and the local community. Unfortunately I have been equally as disgusted and saddened by some attitudes from the general public in regards to my son and behaviours he may display. Why people ever feel the need to comment on another parent’s child or to pass judgemental comments is beyond me. However I have been subjected to many a sly comment in passing whilst my son may be in a distressed state whilst out in public. Therefore in this post I will be discussing 3 main behaviours and emotions which my son may display and what they actually mean when they occur and what to do if you come across a parent you see struggling with these circumstances.
Firstly a meltdown is not the same as a tantrum. Often people will describe a child’s tantrum and an autistic child’s meltdown as the same thing, or not be able to see the difference. Unfortunately there are some major differences.
A meltdown is defined as a complete loss of control brought on by a sensory overload and feelings of being entirely overwhelmed. A meltdown will present itself in behaviours such as screaming, crying, violence or/and an attempt to run away and escape. Meltdowns can cause the person having them to come to physical harm or harm to anybody nearby.
An example, to highlight the difference, is when my son and I went to a Christmas Fayre in our local cathedral. He was excited at first but after being in the cathedral a short time, which he had visited many times prior, I started to notice him acting differently. This is what some may call the “rumble stage” this is the build up to a meltdown. If you are able to spot these signs in your autistic child then you may be able to help prevent a meltdown by using reassurance, calming strategies that the child responds to and removing the child from the situation to a quieter place. Unfortunately at the time I was just beginning my journey as an Autism parent and wasn’t fully aware of how to spot these signs and what may trigger them. Likewise sometimes Louie may have a meltdown and I still have no idea what may have caused it.
On this example I know now it was the crowds, the noise, the different smells and the fact the cathedral would have looked nothing like it usually does. Nowadays I always fully prepare him for an outing with the aid of social stories, the Internet to show him pictures and discussions of what to expect. This helps ease any anxieties about a visit to somewhere new or where there may be a change.
I noted he was starting to cover his ears, squint his eyes until they were almost closed and rub his face into me so that he couldn’t see anything. Finally he ran from me through the crowds, me running as fast as a heavily pregnant woman, at the time, could chase a 3-year-old. He physically lashed out at everyone he passed and threw gifts off the stalls and table tops. Of course alarmed passers-by tutted and shook their heads in disapproval. He hid under a table, screaming, crying and rocking back and forth. After some coaxing he let me hold him and we stayed like that, under the table, for some time until he was calm enough to be led out of the cathedral and to a more peaceful environment. The whole experience is always distressing for both adult and the child whether it be in public or at home
An example of a tantrum is my two-year old screaming, kicking and laying on the floor, refusing to move if they don’t get the pack of milk buttons he wants so badly. Still as distressing in some cases but ultimately if, for example we were in the supermarket, and I said mid tantrum “OK let’s finish the shopping then you can have the buttons” or “Oh look can you put some yoghurts in the trolley for mummy” he would negotiate and the tantrum would end. A tantrum is a means of trying to gain control unlike a meltdown which is a loss of control.
I have lost count of the amount of times a member of the public has addressed me and Louie mid meltdown and commented on his “bad behaviour” or a sly comment of “we never behaved like that in my day.” Luckily I have learnt quickly to completely blank and ignore people but at times it is still infuriating. Thankfully on other occasions members of the public have seen the situation I’m in and offered help. I remember one time struggling to push the Boss Baby when he was a newborn in the pram and attempting to support and console Louie during a meltdown in the middle of the street. My main fear was that Louie would run for the road and I was starting to panic how to steer the buggy and hold onto Louie at the same time. Thankfully a lady came along and offered to push the pram while I helped Louie. She walked home with me pushing the pram and Louie now calm but clinging to me. I remember not being able to speak, such was the lump in my throat due to the overwhelming kindness and gratitude that small gesture had made to my day.
Stimming is defined as self stimulatory behaviour. It is usually displayed as repetitive actions, words or physical movements. Something I didn’t know until I had Louie was that “Stimming” can be caused by positive or negative feelings. Examples of stimming can be:
- Spinning in circles
- Flapping arms
- Verbal repetition of words and phrases
- Humming or noise making
Sometimes when Louie is very happy he can make repetitive screeching noises. Recently we visited the sea life centre and Louie was so happy and excited and consequently let out this ear-piercing, high pitched, short, sharp scream consistently around the first walk of the centre (admittedly every time he did, he made a member of the public jump and I had to stifle my laughter)
Stimming is a common sign of Autism. It is also a way my son and autistic people soothe themselves when they are needing a sensory input or are experiencing a sensory overload. A theory about stimming is that it releases “beta endorphins” which act like an anaesthesia to calm your body and mind. Many people use techniques like this for example biting the top of a pen, tapping your fingers when you are agitated, pacing etc. These all types of “stimming” albeit a lot more subtle.
I first realised Louie was experiencing anxiety when he would talk of a scrunched feeling in his belly. It made me extremely sad to realise he meant he was feeling nervous and anxious about something but it was groundbreaking for us at the time as he was starting to communicate his feelings to us. Autistic children and adults experience high levels of anxiety.
Changes can be one of the main things which causes anxiety for Louie. This does not necessarily mean negative changes. For example last week the school were having a mother’s day lunch at the school. This involved me going to the school and sitting with him and my daughter in the lunch hall. This seemed such a lovely simple idea but for Louie it was huge and such a big difference to his normal school day. The school wrote a social story, a short simple story of what will happen, to prepare him for the day and read it a good week in advance, each day to him. I also spoke to him about it at home. However, even with all the input we gave him, he was anxious and his behaviour was extremely challenging and volatile in the lead up to the day. He told me his stomach hurt constantly, lashed out at me violently, particularly that morning and he didn’t want to go to school. I felt so upset about going but didn’t want to let my daughter down. I myself was filled with anxiety about what lie ahead on the day. Fortunately it was a great experience, we sat and ate lunch together happily, chatting and then when he had finished his food he stood and out of the blue wrapped his arms around my neck and gave me the biggest cuddle before saying “OK mummy I go play now” and running for the playground. I rarely receive voluntary hugs or affection from my son and so of course I cried silent, happy tears into my school dinner!
I hope this post has helped to inform others of some of the behaviours perhaps evident in autistic children and adults. Autism is a “spectrum condition” meaning that although some areas of autism will be similar in autistic people, ultimately each person with autism is different. The behaviours I have spoken about above may affect many autistic children but may display themselves completely differently to how my son may present them. I hope in this post I have been able to raise some awareness in regards to some of the behaviours featured and to help people understand more fully what actually may be happening in a child and parents lives, where some may perceive a child as “naughty” before knowing the bigger picture.