Are We Diagnosing Learning Disability Often Enough?

Over his ten years of life so far my son has ‘collected’ a fair list of diagnosis. First he was given ‘severe autism with global developmental delay’, then six months later the genetic condition ‘Neurofibromatosis Type 1’, then a few years later two complex eye conditions, a year later a third eye condition (a tumour on his optic nerve), two years later epilepsy and in the last few months cortical dysphasia which at first appeared to be a brain tumour! Every one of those diagnosis was given by medical professionals, geneticists, therapists and neurologists. Yet one diagnosis seemed to just ‘happen’ over time that everyone knew about yet no-one spoke about: learning disability.

I knew my son was ‘behind’ others from as young as a few months old. He was ‘late’ to hold his head, give eye contact, respond to his name, speak, interact with his environment, crawl, walk, use a spoon and so on. There wasn’t anything in fact that he wasn’t late at. Before he was even two years old I was told verbally he had the woolly and hopeful diagnosis of ‘global developmental delay’. Wether intentional or not it very much gave the impression that one magic wonderful day my son would suddenly ‘catch up’ with everyone else and all would be perfect. When autism was talked about that became the ‘dominant’ issue and the global delay was rarely mentioned.

Until suddenly without anyone saying anything I received a standard letter from an appointment listing my son’s diagnosis and on it I read ‘learning disability.’ There was no appointment to diagnose, no waiting list to join and no discussion. His ‘global developmental delay’ just magically changed to ‘learning disability’ and that was it.

Yet for so many others that two worded diagnosis seems to never be mentioned. Why is that?

Party it seems to be due to an increase in genetic knowledge. We can now break down genes to an amazing level and more and more children and adults are being diagnosed with rare genetic conditions. While these conditions remain rare it is common for all ‘symptoms’ including learning disability to be generalised under the umbrella of the genetic condition. While years ago the opposite may have been true and the person had a general learning disability now we see the genetic abnormality to be the cause and therefore often lump everything under that one diagnosis. Perhaps as more people get diagnosed with the same genetic conditions we may find that not everyone with that condition actually has learning disabilities and therefore adding ‘with learning disability’ would be a more helpful addition to any genetic diagnosis.

Another reason seems to be the increase in autism diagnosis. I see more and more children diagnosed on the autism spectrum who do have clear learning disabilities but who can not get the latter diagnosed because of a (wrong) assumption that ‘it’s all part of autism’. Yet according to the National Autistic Association, the leading UK charity for autism here are the facts:

Between 44% – 52% of autistic people may have a learning disability.

Between 48% – 56% of autistic people do not have a learning disability.

Autism, on its own, is NOT a learning disability.

Autism, according to Wikipedia is described as follows: ‘Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents usually notice signs during the first three years of their child’s life.’

Where as ‘learning disability’ is described by Mencap, the leading charity for people with learning disabilities as: ‘A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

Mencap goes on to say that around a THIRD of people with a learning disability may also be autistic. By default that means two thirds are not.

Autism and learning disability are two very different conditions.

I am thrilled that we are progressing with genetic knowledge and diagnosing more and more genetic abnormalities and differences. With knowledge comes power. I am also delighted that we are becoming better at picking up both children and adults who are autistic. But I do hope we continue to make sure that everyone, like my son, gets a diagnosis of learning disability when necessary because without it we are denying both present and future support (it’s a life long condition), limiting educational support, and leaving children and adults feeling failures because they don’t understand why they are struggling.

Oh and let’s not only make sure we continue to diagnose learning disability when necessary but let’s make sure more parents, professionals and medical experts explain that global developmental delay is unlikely to mean ‘catch up’ and actually is just a fluffy pre-diagnosis to learning disability.

Let’s tell people the truth. There is no shame in learning disability so why hide it?

My son isn’t hiding his learning disability and neither should anyone else.

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The Top Ten Offensive Comments People Have Made About My Autistic Family

I have two beautiful and wonderful autistic children. I also married a unique and handsome autistic man (though we were married 19 years before he was diagnosed). They all enrich my life but being different does seem to attract attention at times…and not always positive attention!

As a parent and wife I have had to develop broad shoulders and thick skin to many things people say about my family. I thought I would share the top ten most offensive ones and explain why they hurt so much and what you could say instead.

Firstly I want to stress that this is not to condemn anyone or make them feel awful. It’s about education and understanding so if you have said any of the following don’t feel guilty just endeavour to think and understand more from now on. Thank you.

1. ‘Will they recover one day?’

Why is this offensive? Autism isn’t an illness or a disease that gets better. It is a lifelong difference that should be embraced and understood. By asking if my children will recover you are implying they have something awful that needs treatment or therapy to get rid of it. You can’t ‘get rid of’ autism and you insult my family by implying or suggesting they should get over, recover or get better from their unique differences.

It would be better to say ‘Maybe they will change the world one day!’

2. ‘It’s that modern day ‘in thing’ to cover up poor parenting.’

Why is this offensive? You are saying autism is fictitious and that the unique make up of my children and husband which makes them who they are is a negative thing brought about by something I (or in my husband’s case his parents) did. Autism isn’t ‘new’ despite the fact we now understand it better and therefore diagnose more often. Autism happens in poor families, rich families, highly skilled parents, working class, the unemployed and the elite. You will find autistic children and adults in families with a huge variety or parenting methods so there is absolutely no evidence to suggest it has anything to do with poor parenting and suggesting otherwise implies ignorance.

It would be better to say ‘It’s more common in modern days but hopefully that helps parents feel much less alone than before.

3. ‘I’m praying for a cure.’

Why is this offensive? You are praying to change the very being of who my children and husband are! You can’t cure or remove the autism from them any more than you can take out their hearts! God made them exactly who they are and he accepts them and loves them. Why would God want to cure someone he made wonderfully unique?

It would be better to say ‘I’m praying for you as life must be a bit more difficult at times for you.

4. ‘It’s a slap he needs not a diagnosis.’

Why is this offensive? It questions my parenting and implies my child is unruly and undisciplined when he is autistic, not a brat. We say autistic people are very rigid but in fact society is very rigid in how they expect people to behave. Acting differently to expected does not mean my child needs corrected it means we need to be more tolerant and understanding.

Instead you could say ‘It’s understanding he needs and that can start with me.’

5. ‘I hope none of my kids ever copy yours!’

Why is this offensive? It implies my child’s behaviour or actions is something unacceptable to others. It’s usually said to me when my child is flapping, spinning, making repetitive noises, or not answering when spoken to by a stranger. The fact my child is non verbal seems an alien concept to some. There are so many amazing things both my children (and husband) do that I think if other children (and adults) copied their resilience, energy, enthusiasm, excitement and empathy the world would actually be a better place.

Please rephrase your comment to ‘There is so much my children could learn from yours!’

6. ‘Oh everyone has a bit of that really so what’s the big deal?’

Why is this offensive? By implying everyone is on the autism spectrum you imply my children’s and husband’s struggles are not valid and their diagnosis is worthless. In order to be diagnosed with autism you have to meet a high level of criteria and be assessed by professionals in a number of fields of expertise. If we were all a little bit autistic why would we bother diagnosing anyone?

It would be much better to say ‘Oh you have a diagnosed condition. That’s quite a big deal!’

7. ‘They never had that in my day’

Why is this offensive? It implies autism is made up. You only need to meet my family to know this isn’t true. Oh and for the record my husband was born autistic and he’s 60 so it’s ‘been around’ much longer than people think!

Instead it could be said ‘I know autism was around in my days too but unfortunately it wasn’t as well recognised back then.’

8. ‘I’m so sorry. That’s awful.’

Why is this offensive? You are saying that my children and spouse are so defected and bad that them being autistic is something to be ashamed and depressed about. There is nothing awful about autism. Don’t say you are sorry please. It is NOT a tragedy.

If you want to express love when someone is diagnosed please say something like ‘I’m so thankful for you. Being autistic doesn’t change you and I am still your friend.’

9. ‘Are you sure he should be in mainstream with normal kids?’

Why is this offensive? You just implied my child isn’t normal! You also implied my child has no right to be educated among his peers. That is dangerous, insulting and very very hurtful.

Instead be supportive and inclusive and tell me ‘I am so glad your son is in mainstream with my child. It’s how it should be and we all gain from it.’

10. ‘He seems fine to me!’

Why is this offensive? Because my son, my daughter and my husband are all fine already! They do have struggles (wether others see them or not), they do react differently to others sometimes and they may communicate in unique ways but they are perfectly ok too. Just because we don’t see someone’s struggles does not mean they don’t exist.

It’s much more respectful to say ‘You look well. I am proud of how well you are doing.’

The vast majority of people don’t mean to offend and I understand that. However a more careful choice of words and respect go such a long way.

Here’s a cute picture of the three most amazing autistic people I know. Why would anyone want to say any of the above about them?

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

Who sees the hidden young carers?


As her brother climbed awkwardly into the swing she held it still for him as best she could before gripping the chain and gently pushing it forwards and backwards to keep him happy. For all her brother screams and attacks her and makes her life challenging she never stops wanting to help him and support him. She pushed that swing with all her might (he is 21 pounds heavier than she is) until he tired of it and wanted off.

 
The only one who noticed was me.

 
This is just one example of young children who are living their lives as young carers hidden from the eyes of so many around them.

 
Who sees the hidden young carers like my daughter?

Just days before her brother was having a difficult night. He has complex medical and developmental needs and is unable to communicate using speech. He was distressed and agitated and it was taking both myself and my husband to keep him safe and calm. He had just had a difficult meltdown where things had been thrown and broken and as he gradually calmed we were sorting out the mess and chaos surrounding him. As one of us cleaned up broken glass the other went to check on food that had been quickly left cooking downstairs. On my return I could not find my son in his room and neither could I find my daughter. I stood for a minute when I heard a noise I had not heard for days: children laughing!

His sister had decided to run her brother a bath to cheer him up. She had made sure the water was the right temperature and put in his favourite toys and here she was sitting on the toilet beside him checking he was safe like she was suddenly ten years older than her true years.
The only one who knew she had done that was me.

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Who sees the hidden young carers like my 8 year old daughter?

 
Another night recently my husband had popped out for a bit. My son had been bathed and both children were in their nightclothes when my son suddenly began throwing himself down the stairs screaming hysterically. I ran to him and held him tight as I tried to settle and calm him. His anxiety was at crazy levels and he was inconsolable. He was making so much noise I never heard the front door open and I never saw my 8 year old leave the house in just her pyjamas. The first I knew was when my son pulled me to the stair window and my heart missed a beat seeing my daughter the other side of our street closing someone’s front door. The second that door was closed her brother resumed his flapping and clapping like the world was suddenly back to being right again. When I spoke to my daughter later explaining how leaving the house is dangerous she replied ‘My brother needed me. I was only trying to help him.’ (As a side note I live in a very quiet side street and I am fully aware the door should have been locked. Hindsight is a great thing!) 

I was so glad no-one else saw her and I know she won’t do that again. But it still leaves the question who sees the hidden young carers like her?

 
There are young carers groups out there. They do a wonderful job for many young carers. Yet there remains so many young carers like my daughter who are ‘hidden’ due to a number of reasons.

 
My daughter is not recognised as a young carer because we are a two parent family and it is deemed her level of care for her brother is not ‘substantial’ or regular enough.

She is not recognised as a carer because she herself has some needs and it is deemed that due to these needs she is not able to care for her brother.

Until recently she was not considered to be old enough to be a young carer.

It was felt by professionals that we should not allow her to take on the caring role that she herself has readily and willingly taken on.

 
These are just a few reasons why young carers can be ‘hidden’.

 
Statistics say there are around 700,000 young carers in the U.K. That’s the ones who qualify as young carers but what about all the other precious children who are doing more than they should for a disabled or ill family member and no-one sees or knows?

 
I see my daughter so at least I can be there to support her and thank her even if others don’t.

 
There are 13.3 million disabled people in the UK. I wonder how many of them are being cared for today by a hidden young carer?

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The seven hurtful things people say about my child with an eating disorder

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My beautiful blue eyed daughter has recently been diagnosed with an eating disorder at the tender age of seven. While some people have been very supportive others have said some things that really hurt. Here are the most hurtful things I have been told so far:

1. She will eat when she is hungry!
No she will not. If she did she would not have been diagnosed with an eating disorder. She doesn’t ask for food or drink and is not aware when she is hungry. She would go all day without drinking or eating and not even realise.

2. That is what happens when you give in to fussy children!
So is giving my daughter the food she will actually eat and keeping her alive giving in to her? So the fact she would starve herself to the point of requiring medical attention should be ignored just so that I don’t ‘give in’ to her? In that case when you next go to a restaurant or take away don’t bother looking through the menu at what you would like just take whatever they give you and eat it! There is a clear distinction between a child with fussy eating, a child with major sensory issues and a child with a complex eating disorder.

3. Maybe if you let her make it she would eat it.
My daughter enjoys making cakes and dinners and puddings. She enjoys shopping for ingredients and following recipes. But she still refuses to eat it. There is a big difference between cooking and eating. While some children’s issues include handling, mixing and cooking food, my daughter will happily participate in these activities until you ask anything to pass her mouth. I wish I could explain why that is, but I can’t.

4. Can’t you just force feed her?
That seems like abuse to me. Yes there have been times where I have had to almost force vital medications into her and spoon feed her yoghurt or pureed fruit just to get something inside her. But force feeding her would not only have a huge phycological impact on her metal wellbeing but it would also send her the message that she has no control or choice. When I tried feeding her before she would simply vomit it back up. She needs to be able to control what goes inside her mouth and learn that food is good. I need to teach her that eating is positive and not a forced issue that creates distrust and upset.

5. You should try taking cookery classes. Maybe she just doesn’t like your cooking?
This is implying that I am the cause of my child’s mental disorder. Thank you for that! Are you aware I have another child who not only loves my cooking but often wants more and eats vegetables, fruit, salad and a good range of meats and carbohydrates? Have you seen the meals I make for my children? I don’t need guilt heaped on me on top of the stress I already have. That only makes things worse.

6. They never had such rubbish in my days. You just ate what was put in front of you when I was young.
I am so glad you were able to eat the food you were given. I am very confident there would have been children and adults around in ‘your day’ who also had eating disorders you just may not have been aware of them. As awareness grows and more people are willing to talk about these things the more it may ‘appear’ to increase, though I believe it has always been there.

7. Let me have her for a week and I will cure her.
Thank you once again for making me feel inferior and inadequate. What you may not realise is that I would never put my daughter through the stress and anxiety of living with anyone else for a week. Her issues run deep and she requires patience, understanding and love. I would love one day for her to be ‘cured’ but until then we work daily with psychologists, her school, paediatricians and a dietician to monitor her mental well being and physical health. Would you manage to juggle all of that?

Eating disorders and mental health in young children are so often misunderstood. Every single day is hard to watch my beautiful baby struggle with something as basic as eating. It is heartbreaking to watch her lose weight. It is scary thinking of the future. She needs support and understanding, not judgement or pressure.

So what could you say to me instead?

How about ‘do you fancy a coffee and a chat?’ Or simply celebrate the good days with me when she perhaps manages her first ever packet of crisps or half of a banana?
We are not going anywhere. And sadly neither is her eating disorder.
Whatever the future holds I will be right there holding my daughters hand. We will get through this together.

Preparing for ‘The talk’

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It’s always when you are busy that children suddenly choose a moment to spring something on you, and tonight was no different. I was right in the middle of preparing tea for the kids when my six year old walks into the kitchen, her voice tired and slightly emotional:
“Do you know something mum, me and my special friend, I just think there is something different about us…”

Oh boy! It’s just an ordinary Wednesday night in late August. I am cooking dinner and thinking about homework we will be doing together soon after. My mind is on mashed potato and school uniform for tomorrow and now I need to urgently think how to respond to a statement I have been waiting for for a while now.

My daughter has autism and she attends a mainstream school. Her best friend is on the cusp of being diagnosed too though they are both very different.

How to I approach this? I want her to know she is unique and wonderful, but also recognise that she finds some things more of a challenge. I need to keep it at a level a six year old can understand without babying her or over simplifying a very complex neurological condition.

I must remember to talk about social differences, sensory differences, understanding language differently, rigid thinking, repetitive movements….my mind is racing ahead now…

Oh, maybe I should text her friends mum and warn her or even chat to her about how we approach this. The girls are bound to talk tomorrow and I owe it to my friend to prepare her for what her daughter may discuss. Maybe I should delay ‘the talk’ until the girls are together? Yes, maybe we should be doing this together so they both understand and hear the same thing?

Actually, maybe I should wait until my son is not distracting my attention too. He has classic autism so I must remember to talk about that side too. But that might confuse her? She only commented that her and her friend were ‘different’ so maybe she hasn’t realised how different her twin brother is yet..

I finish dishing up dinner to find her right behind me sitting at the table watching and waiting. I go get her brother and give them their dinner and decide ‘the talk’ can wait another moment while I switch the kettle on. I have a feeling I could do with some caffeine to help me.

She hasn’t said anything else since that statement. My drink is now ready and with my mind still whizzing and my heart beating fast I decide I can not delay this any longer.

I need to go carefully. I need to watch my words and check her understanding. She might be ready for this but I am not sure I am…

And go!

“Right sweetie, what was it you were saying about you and your friend being different…”

Sip of caffeine and a short pause later…

“Well I was just thinking mummy…you know at playtime, well me and my friend like red crisps for snack and everyone else has something different”

And breathe….

And with that simple fact ‘the talk’ once again got put to the side for another day.

That day will come though. And I need to be ready. I just hope I don’t have fish fingers and baked beans cooking the next time she asks…

Does her anxiety look big in this?

image Last year, a week before her fifth birthday, my beautiful daughter was diagnosed with autism spectrum disorder. She understands the world very differently. She struggles with changes to routines, has sensory issues, has balance and co-ordination issues, loves repetition, and struggles a lot in social situation, but more than any of these she mostly struggles with severe anxiety. She is anxious every minute of the day, and even through the night.

But unlike physical difficulties which can be plain to see, anxiety is a silent, hidden disability.

Can you tell from her photo she struggles so much with anxiety?

It is well-known adults can have mental health issues. Most people will know someone who seems that bit more ‘stressed’ or anxious about things than others, or who seems very low in mood. There are even medications, both prescribed and off the shelf, for adults who struggle with anxiety, sleep disorders and depression. But what about a young child whose anxiety is just as crippling, whose fears are just as genuine, and who struggles daily with stress?

For so many children with autism this is daily life. The ‘traits’ of autism manifest even more when anxiety is increased. With my daughter that means she clings to me even more, struggles even more with sleep and lines up her toys even more than normal. She withdraws into herself more and her eating becomes even more restricted. She is snappy, uninterested in life and always exhausted. Just like if an adult had no appetite, stopped sleeping, withdrew and had a low mood a doctor, or loved one, would notice something was wrong. Thousands, if not millions, of parents are watching their children struggle with the same thing and there seems to be so little help available.

We are fortunate to already have a diagnosis. We already have a team of professionals involved. Yet when my precious baby girl became so anxious at the transition of starting school she began having severe panic attacks and nose bleeds no-one seemed to know how to help her. Advice was so conflicting from keeping her off school to insisting she went to learn to face her fears. Those who observed her in the school environment reported back that her anxiety was so obvious that she spends all day chewing her tongue. She may be in a mainstream school but I know in my heart it would not matter where she was educated she would still be on constant high anxiety.

So while others have left their infants by the gate from the second day of starting school and went home crying in pride, I had to wait fifteen weeks later before my little one felt ready to take that step alone. Until then I had to hold her hand right up until the moment the school bell rang and she was lined up with all the other children.

Now she is panicking about all the changes involved in the run up to Christmas. Will I remember to come to the play, will she know what to do when her anxiety overcomes her seeing so many people watching the nativity, why are they going to a pantomime instead of doing reading and number work in school, what if a child is off and she wants to give them a Christmas card, why are they having a party, will she have to go see Santa….and so on. Real worries, real fears and causing very real stress to a just turned six-year-old.

I can reassure her. I can prepare her. But I need to balance that by not feeding her fears and allowing them to become even stronger.

She can tell me some of her worries. Many other children with autism can’t.

In two weeks time we have our first meeting with the children’s mental health team. We only got referred because ENT have completed all their tests and concluded her severe nose bleeds have no medical basis and they believe they are directly related to her anxiety. Then her panic attacks were so severe she was struggling to breathe some days. That was back in August and we are only just getting seen in December.

There are days when I hear her laugh and play and read her books to me and I wonder if this can be the same child who becomes distraught if I leave the room to use the bathroom. But you don’t always have to be sad to be stressed. You don’t always have to be house bound to be anxious. And you don’t have to be an adult to struggle with mental health.

We need to recognise that so many children with autism are struggling with anxiety. And we need to have help to support them.

That starts by realising that even when we don’t see it, anxiety is still there: the silent, hidden disability.

Can you see it? Does her anxiety look big in these pictures?

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