Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

When animals and prisons have more rights than those with autism and learning disabilities

There are some blogs that tear me apart to write. This is one of them.

Today a government report was published with the title “The detention of young people with learning disabilities and/or autism.” You can read the report in full here: https://publications.parliament.uk/pa/jt201920/jtselect/jtrights/121/121.pdf

I read about it in the press today and cried. My own child has autism and learning disabilities. He’s non verbal, epileptic and he is doubly incontinent. I am not ashamed or embarrassed to say that at times his care needs are extreme and I struggle. Reading the introduction Members of Parliament wrote to their own report was like reading a diary and a glimpse into a future that could so easily happen to my family. Could this be your story?

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18. Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”. And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.”

The report says “we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families.” It makes recommendations that it says are ‘urgent and not complicated’ but that ‘We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working.

Let’s stop there for a minute. Here we have some of the most vulnerable people in our society having terrible suffering inflicted on them with our own government saying it has lost faith in its own system to protect them.

Would you believe me if I told you that the 2,250 children and adults with autism and/or learning disabilities detained in such places have LESS rights than animals or even prisoners?

Seriously!

Some basic research into the rights of animals showed me that they had the right to:

• need for a suitable environment

• need for a suitable diet

• need to be able to exhibit normal behaviour patterns

• need to be housed with, or apart, from other animals

• need to be protected from pain, suffering, injury and disease.

So why are children and adults with autism and/or learning disabilities denied a suitable living environment, a suitable diet, the right to exhibit normal behavioural patters, housed appropriately and protected from pain suffering and injury? If we (rightly) wouldn’t accept this treatment of animals why are we accepting it, as a society, for those with autism and/or learning disabilities?

What about prisoners who have committed crimes, broke laws and harmed others…none of which I might add apply to those with autism and/or learning disabilities locked up in these so called hospitals?

Prisons are inspected and prisoners have strict human rights including:

• protection from bullying and racial harassment

• being able to get in contact with a solicitor

• healthcare – including support for a mental health condition

All prisoners should be able to spend between 30 minutes and an hour outside in the open air each day.

Did you see that? Even prisoners MUST have time outside every day. Yet so many of the 2,250 children and young people wrongly detained in hospitals with autism and/or learning disabilities under the mental health act are denied this.

It tears my heart and souls apart to think that an animal or someone who has killed others has more rights than my non verbal autistic son.

I can’t accept that.

Can you?

Benign Tumours Are Not Harmless, Innocent Or Fine

Back in May my non verbal ten year old son went for a routine MRI scan because he has a genetic condition called Neurofibromatosis Type 1 (NF1). What happened next changed my entire family. A few weeks later I had a phone call from my son’s neurologist to say they had found a brain tumour and after discussions with a neurosurgeon and oncologist he had major brain surgery a few weeks later. My son was admitted to hospital and underwent a six hour craniotomy operation for a brain tumour biopsy. He had a long recovery.

Results came back that his tumour was ‘benign’ so I looked up the word and breathed a huge sigh of relief. According to the dictionary that meant his tumour was ‘harmless, innocent, superficial and innocuous’. Fantastic!

Except it wasn’t.

As his surgeon later explained it actually doesn’t matter wether a tumour is benign or cancerous as, especially in the brain, they are just as dangerous and cause major effects.

My son may need chemotherapy at some point. He may need further surgery. His tumour caused him to be epileptic, vomit, have visual difficulties, lose balance, be very lethargic, and be very unwell.

Benign isn’t fine and never will be.

We need to rethink urgently what benign means.

Having a benign tumour isn’t fine for Joe who has had two years of chemotherapy and is now almost blind.

Having a benign tumour isn’t fine for Tayen who is now on her fourth round of chemotherapy, epileptic, and is completely blind just to name a few of her very complex needs.

Having a benign tumour isn’t fine for Evia who is also blind and has had two years of chemotherapy.

Having a benign tumour isn’t fine for Logan whose tumours in his neck, throat, heat and arms are so aggressive surgery is no longer an option leaving him with lung disease, epilepsy, learning difficulties, scoliosis and hypotonia.

Having a benign tumour isn’t fine for Ella who has endured major surgery on her spine.

Having a benign tumour isn’t fine for Ronnie who has had chemotherapy and now has vision loss.

Having a benign tumour isn’t fine for Isobel who has a tumour in her head mouth and cheek and is blind in one eye and facially disfigured.

Having a benign tumour isn’t fine for Harley who has had two operations, 7 general anaesthetics, 5 MRI’s and chemotherapy.

Having a benign tumour isn’t fine for Jon-Paul who is in chronic pain daily with a tumour on his ankle.

Having a benign tumour isn’t fine for Heather who has had her leg amputated below the knee die to a tumour.

Having a benign tumour isn’t fine for Ruby who has endured surgery and 18 months of chemotherapy for a brain tumour.

Having a benign. Tumour isn’t fine for Dan who has had chemotherapy, sepsis and has vision and hearing loss.

Having a benign tumour isn’t fine for Harvey who needed brain surgery.

Having a benign tumour isn’t fine for Kiki who has had chemotherapy for a brain tumour.

Having a benign tumour isn’t fine for Kearyn who has vision loss.

Having a benign tumour isn’t fine for Teagan who also has had chemotherapy as vision loss.

Having a benign tumour isn’t fine for Elayna who is having brain surgery next month.

Having a benign tumour isn’t fine for Shay who has had two brain tumour surgeries so far.

And finally having a benign tumour isn’t fine for Evie who has operations to remove her tumours resulting in a facial nerve being severed and loss of hearing.

Are any of these cases ‘harmless, innocent, superficial and innocuous’? Is that how you would describe what my families and all these other families have been through and continue to go through?

Tumours related to NF1 May be benign but that doesn’t mean we can ignore them. Benign tumours cause pain, damage, deformities, disabilities and can kill.

For the sake of my son and all the thousands of other families living with benign tumours, wether NF1 related or not please can we redefine what benign means and stops giving the impression that benign tumours are ‘fine’.

They are absolutely NOT fine.

Please support the Childhood Tumour Trust campaign using the hastag #BenignIsNotFine

For more information please see http://www.childhoodtumourtrust.org.uk

Thank you.

Six Years On: How Has Having A Diagnosis Of Autism Helped?

According to my Facebook memories it is exactly six years today since my daughter was diagnosed. She was 4 at the time and had been going through the process of diagnosis for over a year by the time her appointment came.

I recently heard a parent of a child suspected of being on the spectrum say they would never look to get their child diagnosed as they didn’t wish them to ‘be labelled.’

So how has having my daughter diagnosed helped?

Firstly it helped HER.

This is by far the most important point. My daughter is able to accept herself, understand herself and find her ‘tribe’ by having an identity and knowing that while she may be different she is far from alone. Her mental health was one of the biggest reasons I sought for a diagnosis. There is no shame is being autistic and I seek to promote her autism as part of her wonderful, unique and beautiful personality. It is who she is and she embraces that.

Secondly it helped HER EDUCATION.

By having a diagnosis her anxiety is recognised and supported. Her selective mutism is understood and not ignored. When she takes language as literal teachers can see she isn’t being cheeky or naughty but it is a genuine processing difference. Her social differences are understood and can be supported. Her strengths can be celebrated and her struggles supported. Sadly without a diagnosis some services could not be accessed and therefore support could not be put in place. Having a diagnosis brought patience, understanding and help that she would otherwise have missed out on.

Finally it helped ME.

I am still the same parent I was before but now my mental health has improved making me a stronger and happier person. We are too quick to forget how much parental mental health can affect families. When parents feel they are to blame for their child’s difficulties, anxieties and struggles they become defensive, depressed and isolated. Unfortunately parent blame is rife without a diagnosis as it is assumed the child is struggling through poor parenting. This is very rarely the case but it has destroyed so many families when diagnosis is delayed or withheld. I am more able to embrace my child, celebrate her and enable her because I understand her better and no longer carry the burden of guilt that I am to blame.

Naomi’s diagnosis report is very different to the child she is five years later. Her autism now manifests in very different ways but she is still autistic and both of us celebrate that fact daily.

Autism hasn’t stopped her succeeding, in fact in many ways it has helped her. She’s a rule-abider, people pleaser, unique and funny individual who accepts her own quirks and is happy being herself. She has struggled and even added ‘extra’ diagnosis over the years including an eating disorder but in the six years since her autism diagnosis she has won several awards, been on prime time TV, fought and won for a disabled swing in the local park for her brother and even written some incredible blogs about her own struggles.

Would I still want her diagnosis today if she wasn’t already? Absolutely!

Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.

If you are worried about your child’s development do seek advice from your GP, health visitor or child development team. It is in everyone’s interest to support and diagnose where necessary.

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.

What My Ten Year Old Taught Me About Learning Difficulties

A few months ago my ten year old daughter said something that changed the entire way I look at learning difficulties. I hope it will make you think too.

I remembered it was a Wednesday because that’s the day that clinic is always on. I had picked my daughter up early from school as she had an appointment to see a specialist. My daughter attends mainstream school where she is thriving even though she is autistic, has an eating disorder and anxiety. Coming out of school for appointments is a regular occurrence and this specialist was one she had been seeing for six years. I wasn’t expecting anything significant to happen as that day was just a regular check up.

I was right; the check up went as expected and there was nothing significant to report…well nothing significant about the appointment that is.

What I didn’t expect to happen was the conversation in the car on the journey there. Who knew that a ten minute conversation could leave a lasting impression that has radically changed my thinking!

The journey started off quietly. My daughter is so anxious in school she doesn’t speak (a condition known as selective mutism) and sometimes if I pick her up from school during the day it can take a few minutes before she chats freely. I always carry on and let her talk when she feels ready, if she even wants to that is.

I pulled out of the school car park and headed to the clinic. I was at the second set of traffic lights when she started talking. Out of nowhere she asked a simple question:

Mum, do I have learning difficulties?”

As I drove I answered her question as honestly and as simply as I could. I have a background in teaching and thought I had a good knowledge of what learning difficulties is so I told her that we usually class learning difficulties as a struggle with academic things like maths, reading, writing and understanding what people say. She thought about that for a brief moment and then checked her own understanding by listing a few children she knew from her class, also including her own brother who attends a different school and who has severe non verbal autism, who she thought fitted this description. Knowing her class well from volunteering in her school I was able to confirm to her that, yes, all the children she had mentioned, including her brother, did in fact have learning difficulties.

As I concentrated on the road ahead I wasn’t expecting her next comment at all.

Mum, I don’t like the name learning difficulties.

I had to ask her why. She was ready to answer right away.

“Well I struggle with some things but people think I am clever just because I can read and write, but all those children I mentioned are clever too. I mean my brother can use google street map, My friend knows loads about superheroes and my other friend is great at building Lego. So why do people say they have learning difficulties just because reading or counting is hard. That’s unfair.”

I was so glad I was just pulling into the parking at the clinic because what she had just said was so powerful I needed her to say it again.

‘Naomi can you say that last bit again please?’

“Ok mum. Why do people say my friends and my brother have learning difficulties just because reading and counting is hard for them. I think that’s unfair. Don’t we all struggle with something?’

I let her words sink in before I even turned my engine off. I couldn’t actually believe that I had never thought about it that way before.

It took my ten year old to shake up my beliefs. She doesn’t see any of her friends, or her brother, as different. She recognised that everyone struggles with something, after all even though she could read and write and count well here she was attending a clinic because of something she struggled with. Why wasn’t her issue classed as learning difficulties when her friends and brother’s struggles were?

Children can teach us so much if we let them. What my ten year old taught me about learning difficulties is something I will never forget.

It isn’t fair to judge anyone by their struggles when every single one of us struggles with something. We really aren’t any different to anyone else.

Thats powerful. I had no idea my ten year old could be so insightful.

Three Things I Have Learnt About Children’s Speech From My Non Verbal Son

I thought I knew a fair amount about how children learnt to talk. I knew they watched their caregivers, mimicked sounds and eventually words, and over time those build up to two word sentences, then perhaps phrases, and finally fluent speech. I knew some children spoke a little later than others and some were a little harder to understand but until I had children of my own it never really occurred to me that some children never learn to speak at all.

My son is almost 11 and he still can’t speak. I never knew that was even possible but in the long journey I have been on since he came into my life his lack of speech has actually taught me so much about children’s speech in general. All my assumptions and generalisations were in fact ignorance based on nothing more than limited experience and lack of knowledge.

It’s amazing how having a child who struggles with something others manage seamlessly can make you learn!

So what has my non verbal child taught me about children’s speech?

Through him I have learnt that:

1. Speech is actually not the most important thing after all: communication is!

I was so caught up with panic at the fact my toddler didn’t say any words that I hadn’t noticed how he was communicating! His eyes, his body language, his facial expressions, his noises all communicated in ways that words couldn’t. He had, and still has, ‘happy noises’, ‘agitated noises’, ‘tired noises’ and ‘excited noises’ and by understanding and responding to them we can communicate really well despite a complete lack of spoken language on his part.

We (notice I had to do it too to teach him not just him) have experimented with using objects to communicate, photographs, picture cards, drawings, pointing, and sign language. He didn’t immediately latch on to any particular one but he can sign ‘yes’ and ‘thank you’, he does point now and again and in the end he developed his own very unique means of communication using google street map. What he lacks in spoken language he more than makes up for in ingenious ways of getting his point across in other ways.

2. Lack of speech doesn’t mean lack of understanding.

Receptive language and expressive language are two very different things but until I had a child who can choose his own dinner, follow a simple instruction and get his shoes when I mention I am going to the shops, but who couldn’t actually speak to me I had no idea this was normal. My son isn’t deaf. He hears everything said which unfortunately isn’t always a good thing because when I say to anyone he can’t speak most people then seem to talk to me and completely ignore my son. Even worse are comments like ‘that’s a shame’, and ‘I’m so sorry’ like my son has some awful infliction when he just happens to be non verbal.

My son does have learning difficulties but even taking that into consideration his ability to understand is years above his ability to talk back. The lack of spoken language doesn’t always mean learning difficulties though and given other ways to communicate many non talkers have shown they can gain degrees and pass their driving test and achieve in ways many thought impossible.

3. Having a child who struggles with any aspect of speech is not the fault of the parent.

Did you know that the first thing that happens when you finally get a referral accepted by speech and language therapists is that they send you on a parenting course? The message very much seems to be (wether intentional or not) is that the parent is somehow at fault. My child isn’t non verbal because I am an awful parent. Contrary to what many think my son has books read to him daily, I talk to him all time, I sing nursery rhymes,, he has experienced language enriched environments from birth and he couldn’t be loved more. He just doesn’t talk.

I’ve been through the guilt questioning what I did wrong. I’ve felt the judgement of others and often still do. I know that pitied look when a stranger talks to my child and I explain he can’t speak.

When your child doesn’t master skills other children do there is a feeing of isolation, failure and despair that you are in fact the world’s worst parent. That is, in fact, so untrue. If anything the opposite can often be more accurate as parents over compensate for their child’s struggle by taking time to attend courses, do research, and buy all sorts of resources to give their child the best chance to succeed. My experience of families with a child who struggles in any way with speech is that they move heaven and earth to support their child and go above and beyond. Having a non verbal child is very very rarely due to neglect.

My son is amazing. He is funny, clever, excitable, affectionate and fun. He just happens to be unable to speak.

His inability to form spoken words has actually taught me more about speech than I ever thought possible.

You don’t always need words to communicate anyway.