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


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


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 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.


Why I will no longer say I hate summer holidays…even though I do!

My husband and I were having cross words again. Extreme lack of sleep, hardly getting time to eat and a house that looks like a toy shop was burgled, added to constantly demanding children and it was no wonder we were fractious.

Summer holidays are so hard.

In fact part of me actually hates them. 

We need a break”

“I just want the house to be clean and some time alone!”

“I hate the summer holidays”

They heard us.

I just unwittingly and unfortunately stabbed my child in the heart with my words. 


We made ourselves a coffee and regrouped. Stress affects everyone and this summer has been particular stressful for my family. My autistic son has really struggled to adapt to change but once he realised there was no school he assumed every single day would be simply about what he wanted. When that does not happen he screams for hours (he has complex needs and is non verbal so none of this is his fault)

I made the kids (yet another) snack and we all calmed down.

Then a little tender voice broke the silence:

Mum, it’s ok. I will go back to school and just stay there. Please don’t collect me at home time because I want you to be happy”

And then she cried. Deep sadness overtook her and I held her as the pain of my earlier careless words wrecked havoc in her mind and her heart.

I do hate the school holidays. I hate them even more now.

Parents, like all adults, need to be able to express their emotions. They get stressed and tired and we really are just humans at the end of the day.

But I don’t hate my children. In fact I love them and enjoy being with them more than anything else. 

What I hate about the holidays is this:
I hate that holiday companies are allowed to ridiculously inflate their prices in school holidays preventing so many from getting away.

I hate that family attractions cost so much that they are out of reach for many.

I hate that everyday tasks like shopping are so much more stressful because children want to do fun things and get bored at everyday mundanity.

I hate that my children see parts of me they shouldn’t because the constant 24/7 means I can’t rest or eat without them.

I hate how isolated and alone my family becomes due to having a child with complex needs.

But despite all this I will never ever say again in front of my child that I hate the summer holidays.

She does not need to hear this.

Her mental health is of far greater value than my need to vent. 

Children hear us. What are they hearing when we say we hate summer holidays? They are hearing we hate spending time with them. They hear they are not wanted and they are an inconvenience to mum and dad. They hear that they are the cause of stress. They hear that they are making their parents sad. They hear we hate them.

So from today onwards I may vent in adult only places such as social media, I may text privately a friend to moan, I may even write my stress down BUT I will no longer utter those words again when my child can hear.
I love her way too much for that.

She is the reason I will never say again publicly that I hate summer holidays, even though I do. 

Something to think about perhaps?

Raising A Child With Autism Who Has Too Much Empathy





There is a commonly held belief in society that people with autism lack empathy. Every time I hear this statement I wonder if they have met my daughter.

I am raising a child diagnosed with autism who actually struggles with TOO MUCH EMPATHY.

Here is what it is like:

A few months ago I received a call from the office at my daughter’s school. Due to her autism my daughter struggles with huge anxiety and selective mutism. The school were calling to say my daughter was very upset but they could not work out why. I went down to the school expecting her to have been injured or perhaps bullied. Neither of these were true. My daughter was highly distressed in school because she had witnessed her friend fall over in the playground and cut herself. Long after her friend had had her wound cleaned up, dressed and returned to the classroom, my little girl was still crying for her friend. She later told me she felt as if her own leg had been cut and worried that her friend may have still been in pain. She took on another persons pain and tried to carry that for them. That is the deepest sort of empathy you can ever get.

Prior to this a few weeks before she had walked home from school with me very quietly and deep in thought. She looked like a child who had been in trouble at school that day and who was carrying the burden of guilt. Since she is a child who would never once consider breaking any rules I was naturally worried why she was so downcast. She spent the entire night withdrawn until at bedtime she broke down in tears in my arms. Another child had been moved down the behaviour chart to red that day and her tender heart was utterly broken for them. She truly felt every emotion you would have expected had it been herself it had happened to. She was disappointed, angry, upset and confused. She had this huge amount of stress on her shoulders that didn’t even belong to her yet she had no means of taking any of it away. Despite the crime not being her doing she was determined to punish herself for the wrong doing of another person. As admirable and self sacrificing as that is it is so unhealthy for any 8 year old to bear.

My daughter with autism takes everything to heart. She feels the pain of others like it has been done directly to herself. If someone shouts at anyone and she hears it she feels that voice piecing her fragile self worth like they were shouting directly at her. She takes on blame that is not hers. If I have her at the doctors and someone sneezes she feels responsible and begs me to make them better.

It is harder to live with a child who has too much empathy than not enough. Why? Because you can teach a child to understand the pain of others but it is so much harder to teach them to let the pain of others go when it does not belong to them. You can teach children to care but how do you teach them to stop caring when they care too much?

Having an over empathetic child on the autism spectrum means living with a perfectionist. You see she not only needs to be perfect for herself to prevent disapproval from others but she also feels she has to be perfect for everyone else too so that everyone around her is happy, safe and well.

img_0043The consequences of that are mental health issues, low self esteem and a vulnerability that worries me as a parent so much.

It is vitally important that professionals understand this in order to help my daughter and others like her. Over empathy is so misunderstood and ignored but is is real and it is very concerning.

Everyone who meets my daughter comments on her caring and loving nature. As a parent I am so proud of her and amazed at her incredible innate natural ability to reach out and empathise with others but I also worry she takes this to a level that is very unhealthy.

Could you imagine a nurse who feels the pain of every patient she treats? Or a teacher who breaks down every time a child in her class gets something wrong? Or a check out assistant who feels such empathy for every customer they want to pay for everything themselves?

My child’s future depends on professionals and myself helping her. With so much emphasis on the fact people with autism LACK empathy rather than having TOO MUCH empathy sadly I have a battle on my hands for support.

I thought raising a daughter with autism would be difficult but I had no idea how hard it would be to raise a daughter with autism who also struggles with too much empathy.


The secret epidemic affecting special needs parents


I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.


This post first appeared here.

Being mum to an anxious child

What is it like being mum to a child with severe anxiety?

It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.

It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.

It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.

It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.

It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.

It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.

It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.

It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.

That was just the first hour of our day.

My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.

Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.

I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.

Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.

Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?

I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.

Her anxiety is huge. Her worries are real.

Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.

I acknowledge her anxieties but I also help her overcome them.

That is the role of a mum to a child with severe anxiety.

That is what it is like being mum to an anxious child.


A thank you letter to the friend who told me I had depression

My dear friend,

It was just after my children had returned to school after the long summer holidays. The weather was still decent and the house quiet, yet I had no motivation.

Summer with two children with autism had drained me. There just seemed to be nothing left of me to give. I sat on the couch with a cup of tea and logged onto social media. It was my escape.

All you did was start a chat.

“How are you?”

I was fine. Of course I was fine. I was just tired after seven weeks of non stop coping with my children day and night. I adore my children. They were now back at school and routine was re-established so why would I be anything else but contented, happy and relaxed.

We chatted briefly for a bit while I scrolled through pics of smart children in uniforms, smiling selfies and the usual other tweets and statuses. Today I was just not feeling it for some reason.

I was exhausted. I convinced myself that was it. It was the change from having a noisy, chaotic house for seven weeks to having silence. It was the lack of sleep that comes with having children with autism. It was the one too many meltdowns I had dealt with. It was the isolation of summer. It was the facing another school year of my son still not speaking. It was the thought of another term full of meetings, forms, homework, appointments and even more meetings. It was the anxiety of wondering how my children were coping with huge changes and the thought of how they would be when they came home and we had the brunt of all that stress. It was wondering how to reconnect with my husband who I had barely had a chance to speak to for seven weeks alone. A mix of everything; that was what was wrong today. Tomorrow I would be fine.

An hour or so later, and still sitting on that sofa, my doorbell rang.

Of course it was you.

“I’m worried about you.”

So we chatted face to face for a bit. I just needed a down day I told you. Let me catch up with some sleep and get my house in order and all will be fine. Maybe I just need to get my hair cut or something? Perhaps a bit of retail therapy would get my spark back?

“Perhaps you should go see your doctor?” You said.

Why would my doctor want to see me? Antibiotics or painkillers won’t help me. I don’t feel ‘ill’?

“You may be depressed?”

Who me? Really?

I called the doctor in the end, if nothing else just to get you off my back.

Thank you for pushing me. Thank you for caring enough to reach out to me. Thank you for noticing me struggling.

Yes, you were right, I was depressed. I never expected that. Maybe you did? Maybe you were able to see something I couldn’t?

I am not sure if you remember that day as much as I do? It was seven months ago now but it changed my life. The doctor gave me tablets and I am so much stronger, more motivated and happier now.

One day I may be well enough to come off them. For now the stress and strain of everyday life with two young children with autism means I need them. I am not ashamed of that. Why should I be?

I am just ashamed I never sought help sooner.

I will never forget you my friend. I have not seen you in person for a while now but you were there at the right time and I am grateful for that.

You taught me to look after myself. You also taught me that sometimes love and care means stepping out when you think someone is struggling.

I just want you to know that I am looking out for others now just as you looked out for me.

You taught me that sometimes others can have an insight that the person themselves can not see.

You taught me that friendship and social media can be a way to spot things in others and help them.

You were more than a virtual friend, you were there when I needed you.

Thank you again.

I really hope all is well with you and yours.

In gratitude forever,

One of your social media friends.



No-one today should be caring alone


No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne