The Five Signs That Tell Me My Autistic Child Needs Help

My children are autistic. I don’t want to cure them and I love them for exactly who they are.

However life for those with autism comes with extra challenges and for both of my children their difficulties in communicating often mean that the first I realise something is wrong is when we hit a crisis. As hard and heartbreaking as it is for me as a mum to watch my children struggle at times with these five difficulties I know it is so much harder for them. They are trying to communicate to me, and to others around them, that they need help and the onus is on myself, as their mum, and on the other professionals to watch out for these signs so we can intervene and support them through whatever the source of their distress is.

Here are the top five signs my children are struggling:

Sign number 1: Increase in meltdowns and shutdowns.

img_2186-1Behaviour is communication. No child (or adult) has a meltdown or a shutdown for no reason. They don’t just ‘feel like it’ or ‘want their own way’ as many have suggested to me about my children. For a child who has held it together emotionally all day at school, like a spring tightly coiled, is it any wonder when they finally reach a safe environment where they are free from judgement and pressure that they have to ‘let it out’? Autistic adults often have the same struggle as they are faced with working in environments that can cause sensory issues, social misunderstandings and continued demands placed upon them all day long.

Long meltdowns or periods of withdrawal and silence are alarm bells to me that something is troubling my child and I need to deal with it.

Sign number 2: Stopping eating

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This is something that my daughter does far more than my son who would eat his own bedding given half the chance! When your world is out of control and there are so few things you can control it makes sense to my daughter to control what she eats. I know right away if a child has called her names in the school playground, or she got an answer wrong in her spelling test as she will refuse to eat even the few foods that she loves.

 

 

Sign three: Mental health crash

It is blatantly obvious to me that my child is struggling when they tell me they want to die. When you misinterpret social situations, take language literally and face sensory bombardment daily is it any wonder at times that my child feels it is all too much? Signs of a mental health crash in autistic people are exactly the same as everyone else. I look out for not sleeping, loss of appetite, no interest in toys or activities they previously loved and wanting to be alone all the time. For my autistic daughter another sign is not having an obsession. When she tells me she is bored I always check if it is just simply boredom or if in fact her mental health is so poor she is unable to even think about doing anything. Lack of motivation, and no desire to please in my child is uncharacteristic and would make me want to investigate further.

Sign four: Increase or decrease in ritualistic behaviour

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My son has a lot of rituals. From when he wakes and has to bring down every cuddly toy from his bed to his arm chair, from the certain order things must be lined up at the side of the bath when he gets washed, to where he sits in the car..it all has to be ‘right’ or he gets distressed. I am familiar with his home rituals and school need to be fully familiar with his school rituals. If he suddenly stops a ritual he had always done, like the night recently he refused to get his nightly bath, I immediately knew something was wrong. Less than ten minutes later he had a seizure. He has no way of talking and his change of routine was a red flag to me that something was wrong. The need for order over and above the normal level makes me sense something is happening and they need help.

Sign five: Self harming

My son has a history of self harming due to severe communication difficulties and frustration but after a lot of support we have got this to a point where he is safe. However the first sign of him returning to making his skin bleed, or biting himself or banging his head against things repeatedly and I know he needs help urgently. He has no way of communicating pain so harming himself can sadly be his only way to show me his body needs help. It can also become a habit and a sign that his sensory needs are not being met.

 

When I hurt I have words, I have knowledge of who to ask for help and I have experience of being listened to and understood. Sadly many people with autism are not understood. They are belittled, mocked, have too many demands placed on them from a neuro-typical world and face sensory struggles every day. They perhaps find transitions difficult, a simple change in routine confuses them or they have misunderstood what someone said to them.

Just because what is troubling them seems trivial to you or me as a non autistics, does not give me or anyone else the right to say my children’s feelings are not valid.

We owe it to autistic children and adults to hear them and support them regardless how they communicate to us. Look out for these signs in anyone you know who is autistic.

It is often the case of actions speaking louder than words.

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What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?

The nine household items responsible for meltdowns in my autistic children.

Don’t they look so sweet and happy?

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That’s because they usually are!

Yet all that can change in an instant when they see or hear certain household items. There are certain things pretty much every home has that cause both of these little angels to go into complete sensory meltdown in the blink of an eye. They become terrified, traumatised and tearful and we often end up exhausted.

So what could be the cause of such fear you may ask?

Here are the top household items that cause meltdowns in my children with autism (in no particular order).

1. The vacuum cleaner.

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Just the very appearance of this cleaner causes both children to run for the hills with their ears covered! It’s noisy, smelly, changes the carpets and moves their toys. Wisdom has taught me to keep this machine firmly in the cupboard until the kids are out of the way.

2. The hairdryer.

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I have tried to get them to hold it, turn it on and off and even use it on me but no, this item is more like a raoring lion than a plastic air blower to them. Every single time it is needed to be used they fight it even if it is only for my hair. I doubt either of them has a future in hairdressing!

3. Nail clippers.

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Oh boy you have never seen a meltdown until you see my children react to these little things! They run, hide and scream so loud I am surprised my neighbours have never called the police to us. They would rather have nails jagging into them or so long their shoes no longer fit than have me take five minutes to gently use nail clippers. Even the highest trained manicurist would struggle to contain the fear my kids have for nail trimming.

4. The shower.

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We are blessed to have a bath (in which my kids would happily spend all night in) but sometimes for speed it would be lovely to have them step into the shower quickly before school or after garden play. I may as well suggest being eaten alive by a crocodile! Showers in swimming pools, caravans and hotels are avoided like the plague!

5. A hair brush.

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I am a gentle parent, that much I promise you! I brush their hair slowly and calmly and never pull or tug but we still have a huge daily battle to get hair brushed or combed. Gel, spray or mouse is never well recieved so I settle for a basic brush most days. I pray they never ever get the dreaded head lice!

6. The hair trimmer.

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I dread the time we have to use these. We have tried barbers and hairdressers but after badly cut ears, and even being banned from one local barbers we decided to try doing it ourselves. It gets so bad I find myself using a number one so that we can go a lot longer before it is required again. It takes days for my son to recover from a hair cut of any sort.

7. Toothpaste and toothbrush.

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I don’t think there is a brand of toothpaste we haven’t tried in a vain attempt to get my children to brush their teeth. They are too strong, too minty, too lumpy or too colourful! It never ceases to amaze me that my child chews everything he can get his hands on yet goes crazy at the sight of a toothbrush…something that is actually designed to go in his mouth! We have tried apps on the iPad, songs, timers, character toothpaste and brushes and visual timetables but the sensory overload of brushing seems to cause us to hit a brick wall every night. Dentistry is another career choice I reckon I can score off the list for them both!

8. The food mixer.

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Thankfully this gadget isn’t used as often as the others but every time it is used we have meltdown city. It is loud, it vibrates and it makes it impossible for them to stay in the same room. I am eternally grateful it is only ever used for a few minutes although the calming down of the children takes so much longer!

9. Socks.

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Yes you read that right! Socks! They don’t make noise, or make them wet or even go in their mouths yet socks drive my children nuts! We have tried the seemless variety and every colour under the sun but it seems anything that covers their feet is unbearable and ought to be binned. We have had socks thrown out of car windows, left in school, flushed down the toilet and hidden at the bottom of the toy box. They are the last item of clothing put on before school and the first items to come off. Cold feet (with uncut nails!) is the way forward apparently!

As long as my children have no shower, long nails with no socks on, wet (uncut) hair that hasn’t been brushed and unclean teeth and my carpets are not vacuumed all is happy in my household!

They don’t seem to see the problems…unfortunately I do!

If you happen to walk past my house and hears screaming you can take a bet on which household item of these I tried using.

While the kids are at school I am off to have a shower, brush my teeth, dry my hair and trim my nails…and put socks on. It will be nice to do them all meltdowns free for once!

 

 

 

Ten signs I dread as an autism parent

I have two children with autism. Some days are wonderful, calm and peaceful but some days my children become so distressed over something and there is very little I can do to calm them down.

This week for example I took my son to the local store with me only to discover his favourite lift was ‘out of order’. It took hours for him to get over that sadly. Then today I had to take him for an appointment at hospital but on our way back to school one of the roads was closed and I had to take a diversion. This change caused so much upset it took three members of staff to support him back into school.

thise are just two examples of how a sign can cause so much upset to my children, even though one of them still can’t read. I try and avoid the following ones as much as possible.

1.
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After today I will be checking websites before trips as this simple red road sign caused so much upset and confusion. Rigid thinking means my son expects to go the same way every time and this is just not allowed!

2.

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Sticking with road signs this one particularly makes my daughter cry! Her sound sensitivity means that even with ear defenders on the noise of people digging up a road is more than she can bear.

3.

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My final road related one is this.

Stopping or waiting is not something either of my children find easy at all. This little light has caused so much screaming, yelling and biting in my family. They may have to learn but the less of these I have in any journey the better off we all are!

4.

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So we did the social story, the now and next board and then navigated the journey only to get there are find this! This one has to be one of the worst signs any parent sees when they have excited, prepared children. Sometimes, just sometimes, Google is wrong and opening hours are NOT as advertised. The fall out from this one is BAD!

5.

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They want one thing for their birthday, just one thing. And all you see is this! Or in my daughter’s case they have a very limitted diet and only eat a certain brand of a certain spread. But the shop shelf has this. This one sends me into as much of a meltdown as my kids!

6.

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Sticking with the food theme. So you stocked up on the few things they will eat but finally you realise you need to restock…and you see this small but terrifying label on the top corner! Run for your life…this is as major as a packet changing in my house! Don’t kid yourself…they will notice!

7.

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Please be quiet? Are you serious? Have you tried to keep any child quiet anywhere, let alone a non verbal child with autism. My children make their presence known and find it pretty much impossible to keep either of them silent.

8.

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This sign is so hard to explain. Unfortunately my children live in the age of instant wifi and can not yet work out why anywhere would not have free instant access to the Internet. Neither of them can understand why apps don’t work in certain places or why they can’t keep watching you tube in the car. We have had lots of outrage over this one!

9.

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Sticking with technology this little red face has in turn made my little darling’s faces turn a similar shade. I have nightmares about this little icon! For those who don’t know this one means you tube has stopped working…in other words the world has ended in my house!

10.

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And finally, you may wish to look away from this one as the sight of it has brought many an autism parent to tears. The meltdowns this has caused can not be counted. Apparently technology should have endless power and energy…rather like they expect me to as an autism parent too.

Looking at these signs has driven my power to less than ten percent too, so I will leave you with my favourite sign ever as an autism parent:

Race you there!

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