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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How one 9 year-old Described her Brother’s Autism in just a few pen strokes

There was nothing special about Thursday evening as I worked my way through the typical bedtime routine for my 9 year old twins. They had already had a bath, clean pyjamas on, eaten some supper and now they had moved into their separate rooms ready for stories, kisses and pre-sleep chats.

It’s hard to split yourself in two (or three, or four even if you are blessed with a quiver full) but my daughter willingly lets me see to her brother first most nights. She sacrifices so much for her autistic brother and this is just another example of how she puts his needs before her own daily. While she amused herself quietly with what I assumed was some colouring in or reading I continued on to settle her somewhat hyperactive brother next door.

I read the same story as always. He chooses the same story every night despite the fact he has a whole basket of books in his room. His autism means routines should never change and repetition is very much the name of the game. Unlike his sister he isn’t going to talk to me at bedtime about his school anxieties or fall outs with his friends. He has no friends. I have no idea what goes on at school (or anywhere he is out of my care) and at nine he has no spoken language. I hug and kiss him. I get nothing much in return. One day I might, but not tonight. I tuck him in, leave the room and turn off his light.

As I go next door to his sister her eyes light up as she clutches a little piece of paper to give to me.

“Mummy, I’ve been thinking about Isaac tonight. Can I show you something Mummy?”

And at that she handed me this:

I asked her to talk to me about it.

Mummy, these are the wires in my head. One is the talking wire, one is the brushing my own teeth wire, one is knowing my times tables in maths wire, one is knowing how to write wire, this one is playing with friends wire, this is the knowing how to read wire…”

She named all twelve straight lines she had drawn and said how for her, like most other children, she was able to do all of the things she listed. She talked about how some of her wires connect right away and others took time but they ‘knew where they were going’ and as she gets older and learns more ‘new things’ she will have ‘more wires that know where to go and connect up straight’.

I was amazed that a child could be so aware, so astute and so insightful. I let her continue on.

‘And this, I think, is my brother’s wires mum. He finds everything so hard doesn’t he? This is his talking wire mum. Look it goes to the connection for brushing teeth. No wonder he can’t talk when his brain gets confused like that! This is his writing wire…it’s supposed to be connected to the writing one at the bottom but instead it’s connected to the playing with friends wire. It’s all so hard when your brain gets confused but I know he is trying! I mean everything must be so hard when the wires are all jumbled up like this!’

I looked at her with tears behind my eyes. If anyone will advocate in life for her brother when I am gone it will be his sister. She understands him like no other.

My daughter knows I write. So I had to ask her.

“Naomi, is it ok for mummy to share this with other people? Is that ok with you?”

She smiled and in her usual determined way took the sheet back from me and pointed to her strokes again.

“Only if you make sure you tell everyone that it’s ok to have autism. Make sure people know Isaac does HAVE wires. He has a brain. He is trying. If I could make his wires straight Mummy I would, do you know that?”

I hugged her tight and kissed her forehead. She doesn’t want her brother to not have autism. I know that. She just wants to hear his voice, be able to play with him, brush her teeth beside him, write stories with him and practice her times tables with him like she does her friends from school.

She might want a brother with straight lined connections, but she could not love her autistic brother more if she tried, with crisscross jumbled wires and all the wonderful quirkiness that that brings.

Her understanding maybe over simplified in many ways but her fierce protection and love can never be denied.

I keep looking at that piece of paper.

She’s so right. My son is severely autistic with significant learning difficulties. He will need care all his life. But she’s spot on: he still has wires. He still has a brain. He can learn. He has potential. Life maybe much more confusing for him with wires that go different ways to what ours do but is that such a massive problem?

Maybe, just maybe, having straight lined connections in your brain is not for everyone. The world would be a very boring place if all our brains looked the same after all.

Three Reasons to vote for Naomi Gwynne in the National Diversity Awards

Have you heard about the National Diversity Awards? (http://www.nationaldiversityawards.co.uk/)

For those that haven’t heard they are a prestigious award ceremony for individuals, charities and organisations within the UK who are promoting and making the world a more diverse and inclusive society. They were launched in 2012 and have huge sponsors including Microsoft and endorsed by many celebrities.

I was aware of them through social media when both a charity I support and a friend I know where both nominated last year and I had the honour of seeing both get through to the finals and attend the awards night. It looked amazing!

Imagine my utter surprise then when a few weeks ago an email appeared in my inbox from the National Diversity Awards informing me that my 9 year old daughter had been nominated for this incredible award this year! In fact I was so shocked I had to call them up as I was sure someone had made a mistake! Besides I had never seen a child nominated before so was sure something had gone wrong. I cried on the phone when I was told that, yes, my 9 year old daughter had really been nominated and yes, of course, children could and would be accepted providing they met the criteria.

I am absolutely delighted and honoured to tell you that Naomi meets the criteria…at 9!

Now it is all about votes. When voting you will be asked your email address and the reason why you are voting for Naomi. So I want to give you THREE reasons why I feel you should vote for my daughter. Of course I am biased but let’s stick to the facts:

1. She single handedly forced the local council to make a children’s play park more inclusive for children with disabilities.

How did she do this? Well Naomi has a twin brother who has complex medical and developmental needs. When her local play park was redeveloped at a cost of £160,000 Naomi was so excited to go and play with her brother. However on returning home she announced she was ‘sad’ because she noticed right away that while she was able to use the new swings her disabled brother wasn’t. She watched as all he could do was place his cuddly toys in the baby swing and push them because he was too big for the younger swings but developmentally unable to use the traditional flat swings for older children. Of her own doing at just 8 years old she put pen to paper and wrote this letter to the ‘park builders’.

As her mum I was so touched I knew something had to be done. Her voice needed heard. All I did was photograph her letter and tweet the council. It was all Naomi’s thoughts, ideas and writing. Neither she nor I had any idea how a child’s letter would catch the attention of the media.

Naomi went on to appear in all the national and local newspapers. She was featured on ITV news, magazines and even as far away as RTN in Germany! None of this phased Naomi who was much more delighted to be able to push her brother on a suitable swing when one was finally installed five days after writing her letter.

This alone deserves her to win! That swing is now used by thousands of children, not only children with disabilities but children of all ages and abilities who are now able to enjoy the park better as a result of the action of one child’s compassion and determination.

2. She overcame her own anxiety to appear on BBC breakfast to help fight for children with autism to be allowed sensory aids when schools were banning them.

When fidget spinners were suddenly all the craze I happened to write an article about how lovely it was for children like mine ,who both have autism and sensory needs, to be included more. As schools began banning the aids because they had suddenly become the latest craze Naomi became quite angry. She was indignant that children with sensory needs should be punished just because a sensory aid had become a popular toy for everyone. So when I was contacted by the BBC and invited onto their flagship BBC breakfast show and asked if my children would like to come too Naomi was determined to not only come, but to show personally how sensory aids were useful for children like her and her brother.

This involved a long train journey, a stay in a hotel overnight and a very very early rise as we had to be in the studio at 6am for the live show. All of this would be a challenge for any 8 year old, but for Naomi who has autism, severe anxiety and selective mutism all of this change was massive.

She did it! She may not have been able to speak but she showed the presenters her sensory aids and was determined to be there to fight for the right of others like her to have aids they need. I was so proud of her.

She overcame her own fears and anxieties to help others. That’s incredible for anyone let alone a child.

3. She showed immense bravery and courage to open up and write about her own struggles with food in order to try and help others.

Naomi knew I wrote about her and her brother. She was always asked her permission before I published anything about her and she would read over and change anything she wished. When one day a friend asked if Naomi would like to write something herself and suggested she may like to talk about her struggles with food Naomi decided she was ready. She dictated her thoughts to me and made sure I was recording them exactly as she said. When she had read through what she has said and amended anything she wanted I then asked her if she wanted to keep it for herself or share with others. Her immediate answer was to share it because others may be worried about the same things and she didn’t want them feeling alone! So her first blog was published via my own blog and it went viral very quickly. To date it has been read by over 250 thousand people all around the world and helped so many to understand and empathise and therefore hopefully become more tolerant and inclusive of those who struggle with food and eating.

Have a read at her words here: https://faithmummy.wordpress.com/2017/08/07/the-reason-i-dont-like-to-eat/

I am sure you will agree that showing that level of courage and bravely to make the world more inclusive and understanding of eating disorders deserves recognition alone.

So there are my three reasons to vote for Naomi. Naomi has a comprehensive diagnosis of autism, selective mutism, anxiety and an eating disorder. She has a twin brother who has severe needs and is unable to talk. She lives with his challenging and unpredictable behaviour and his ever changing medical needs. Recently she has had to watch him taking seizures in front of her yet she remains calm, loving and gentle at all times towards him. From aged 5 when she started school she has stood out as a child with huge compassion and empathy using the skills she gained from living with her brother to help others. (https://faithmummy.wordpress.com/2016/01/15/the-day-my-five-year-old-changed-her-class-without-saying-a-word/)

She has achieved more in 9 years than many of us achieve in a lifetime.

I should not really have been shocked she was nominated for such a prestigious award but in my eyes she deserves to be honoured at any level.

If you agree and you would like to vote for her you can do so here: https://nominate.nationaldiversityawards.co.uk/nominate/endorse/31936

Thank you.

Even if she does not progress any further it is so good for her to know that her efforts are worthy of recognition and that people see that she really is making the world a more diverse and inclusive place to be..even at 9.