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What is an Autism Meltdown?

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An autism meltdown is something I read about very early in our journey to a diagnosis and what I read made me cry in relief! Since then as a family we’ve learnt to navigate this challenge without judgement and oftentimes ignoring what parents of Neurotypical kids might think is the best way to handle it.

For us, meltdowns usually don’t happen in a public place, occasionally they do, but most often it’s in a safe place like our home. Now this can pose a problem, especially for those with girls, as it means no one else sees the struggle. Our journey to diagnosis kicked up a notch when a meltdown happened outside the school in view of the SENco (Special Educational Needs Co-ordinator).

A meltdown isn’t a temper tantrum, though it looks like it, it’s a complete overload, think nuclear meltdown! So this will often happen after a stimulating day at school or when you’ve been somewhere where there has been a need for heightened sensory processing. (See my blog post for details of sensory processing).

This means reasoning, cajoling, or scolding isn’t going to make it better. Think of a meltdown similar to an epileptic fit and you’re closer to understanding what’s going on. The child has lost control, so you need to hold your control and be the parent. This will look different for every child.

For us it has meant we go into first aid mode. We need to get our daughter somewhere safe (when she was younger this meant physically removing her to a place she could be alone), and then give her time to wind down. For every child this will be different, maybe they need to shout in their room, or snuggle themselves under a weighted blanket, or have a punch bag to let it out on.

The important thing is not to try and work this out during the meltdown. Talk about it the next day or when things are next calm. Don’t be judgemental, ask questions, be loving and kind. It must be scary for them to have lost control. They need to know they’re still loved even though they’ve screamed at you and said hurtful things.

It’s not personal when your child says they hate you. They’re hating everything! Get yourself out of the way if you’re not helping. When things are calm, if it helps give a hug, or if that’s not helpful, remind them that you love them and want to help if you can.

I know I’m making it sound like it’s easy and everything will be ok if you follow these steps, but believe me, parenting is never a case of following the steps to get a desired outcome. But we’ve found that keeping channels of communication open, learning not to yell back and remembering the toddler rule of ‘Don’t negotiate with terrorists!’ has been really helpful! They don’t mean to hurt you, they’re overloaded.

Our role is to help take the load off. Help them to find what’s helpful and what things are triggers, then giving them the space they need to wind down. Find someone to speak to, don’t do this alone. Having another parent to cry with when times are tough is a real life line. There are support groups available locally or use social media to find a buddy to journey this with.

You are doing a great job, don’t give up. Keep on loving and giving space and like us you’ll start to see self-regulation.

Sensory Processing

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I started to write about this last week but as it’s such a huge topic I decided to dedicate this week to it. If you don’t know what sensory processing is, here is a definition for you from Wikipedia.

“Sensory processing is the process that organizes sensation from one’s own body and the environment, thus making it possible to use the body effectively within the environment.”

This is a bit confusing but essentially it means the way you interact with the world through your senses.

Traditionally we think of ourselves as having five senses – Sight, Hearing, Smell, Taste and Touch. For processing purposes I would include two extras – Proprioception and Interoception. These two you might not be familiar with.

Proprioception is perception or awareness of the position and movement of the body. This is why some people love a weighted blanket, the pressure on their body is helpful in regulating their emotions, it makes them feels safe. For some people a tight hug will do the same!

Interoception is an awareness of what is going on within your body. Our daughter is on the hypo (low sensitivity) end of the spectrum for this sense. This is why we have to be very aware of what might be going on with her in terms of mood as it might be that she is in pain and isn’t aware of where it’s coming from. She once had a burst eardrum and didn’t know it, we knew something was wrong but it took a few days until we worked out what it was. I’m sure you can tell that having low sensitivity here is dangerous.

When it comes to sensory processing we are all on a spectrum of how we handle each sense. We can have varying levels of sensitivity for each sense. My husband for example has a hyper (high) sensitivity to sound. He literally flinches as certain sounds, a spoon against a cup, a scrape of a knife on a plate, an unexpected loud laugh from a child! Where as I would say I have hypo (low) sensitivity to sound. Kids can make as much noise as they like and I can carry on with what I’m doing uninterrupted!

It’s really helpful recognising where your own sensitivities are as you can then begin to get more sympathy for those with sensory processing disorders. Often those on the Autism Spectrum easily become overwhelmed when there is a lot of sensory information to handle.

Think of walking into a supermarket. Immediately you’re hit with the bright lighting and signs everywhere, some swinging from the ceiling, as well as people all around in clashing colours. Then the sound of different voices chatting, babies crying, possibly music playing, beeping of the checkout and trolley wheels rolling. The smell of the cafe or the pumped through smell from the bakery, along with the food smells and the body odour of people all around. The feel of the trolley handle, the label on your clothes, your socks’ seams, the possibility of being bumped into. Needing to be aware of what you’re doing with your body as you walk around, how to avoid bumping things with the trolley, using the self scan machine, or brave a stranger by checking out with someone, the consideration of whether your body needs anything, are you hungry or thirsty, do you need to go to the bathroom, are you getting anxious? That’s before you even think about what you’re there to buy.

Feeling stressed yet? Imagine that on a daily basis in every setting you enter and maybe you’ll begin to see why it can be hard for a child to hold in their emotions. They may be able to do it while they’re in the store or at school but get them home and a meltdown is imminent.

The better we understand how overwhelming the world is for those with Sensory Processing Disorders the more compassionate we’ll become. We won’t roll our eyes when we hear of a supermarket having times of low sensory input for certain shoppers, we’ll applaud them. We won’t tut at the parent as they handle a child lying on the floor crying with their hands over their ears.

There are so many different ways we interact with the world that we can make easier for those with processing disorders. If it’s your own child you can cut the labels out of their tops, you can buy them seamless socks, you can set the washing machine to be on when they’re not in earshot.

It’s good to gradually try to decrease or increase sensitivity to help us to cope better in the world. Sean for instance won’t say anything about a single tap of a spoon on a cup but when it gets to the fifth or sixth time he will need to ask if it’s really necessary!

Tolerance is preached everywhere so let’s learn to be kind to ourselves as well as those around us. We’re all so different and different doesn’t mean wrong!

Journey to Autism Diagnosis – Part Six – Diagnosis and Beyond

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Now we have a diagnosis, the real work begins. I’ve researched and done training in sensory parenting and watch dozen’s of YouTube Video’s.

You might have read our story and recognise your own in some of the things I’ve shared. Don’t panic, some of the most gifted entrepreneurs who have ever lived have had ASD. There are some really fantastic positives to this way of thinking. Here’s a great video that busts some myths about autism. Ten things you should know about autism.

The most helpful YouTuber on the subject of Autism is Tony Attwood. He has some really helpful information particularly on ‘Girls with Autism’ and why this is such an undiagnosed group.

One of his most useful tips is in trying to help identify emotions. He suggests to find a special interest of theirs and use that to help. For our daughter, she loves the Harry Potter stories, so when something happens, good or bad, we’ll ask her which bit of the story it reminds her of. That then gives us an idea of where she’s at.

A big concern that Tony Atwood raises for girls with ASD or Asperger’s is poor mental health and vulnerability to abuse. Sean and I have talked about this a lot and it’s definitely a concern of ours. But as this is a difficult subject to talk about with a teenager who doesn’t like to talk about these things, we’ve found the best way to to do it through story.

I spend about an hour most nights reading to her. We have been through the Harry Potter series twice and the Hunger games. In both these books there are lots of relationships to analyse and ask – ‘Why do you think he/she did that?’ ‘Is he/she really being kind or just pretending?’ ‘How would you do it differently?’

This isn’t perfect, we’re still learning on this journey, but our main aim to try to keep lines of communication open. We talk about the fact that we don’t keep secrets from each other because they are often negative but we do have surprises and they’re fun! A useful distinction.

Another struggle for those with ASD can be around eating. Typically food would need to be beige in colour to be accepted, not always and not for our daughter. Taste falls into the sensory category and there can be a range from hyper (high) sensitivity to hypo (low) sensitivity. This means it either has to have no flavour or lots! For us it needs to have lots. Our approach has been to try to get flavourful food that isn’t full of additives and sugars. When she was little I would bake cheese scones with a bit of cayenne pepper in! It helps that I enjoy to cook as it means we have a lot of variety but I will always signpost what we’re eating for the week.

Sensory issues whether hyper or hypo affect every sense, taste, hearing, sight, smell and touch. There are two others, these are, proprioception and introception. There’s so much to say on the issue of sensory awareness so I’ll write about that next week.

But going back to food, the important thing is that we help her to eat something and educate about healthy eating and by sometimes standing our ground about some foods that are off limits. This is tough and we have an issue of hoarding and hiding food, apparently common, even with all this though we feel blessed to have a daughter who is willing, on the whole to try new foods.

There are so many helpful books, TED talks and YouTube videos that will help you in your journey to learn more. I mentioned in a previous blog about a BBC documentary called ‘Our Family and Autism’ which is so helpful when it comes to coping with a diagnosis whether that’s for a child or as an adult. This website -> https://thegirlwiththecurlyhair.co.uk/ is really helpful and has loads of links to learn more.

As I said earlier, next week I will focus on Sensory Processing and all that we’ve learnt in that area. I hope sharing all this has been helpful, if you have any questions or other links that may be helpful please put them in the comments.

Journey to Autism Diagnosis – Part Five – Multi Agency Assessment (MAA)

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As you can tell by the title we finally got to an assessment when our daughter was in year five. This was triggered by the fact our daughter had a ‘meltdown’ that the SENco (Special Educational Needs Co-ordinator) saw. It was outside school, for no real reason except exhaustion. For us it was a normal part of our routine that after school this happened but normally it happened behind the closed doors of our home.

From that time on we got a referral, even though I had to dictate the referral to the SENco. After each assessment we heard the same thing, why hasn’t she had this done much sooner?

It was all finished during year six. She was fed up of visits to the hospital and tests! The assessments had revealed a learning age of around reception or year one which was painful enough to hear.

Finally we had the consultant appointment where we received the results of the MAA (Multi Agency Assessment). Even though we were expecting it, the stark realities of need were painful to hear. Sean took it hard, I think there’s a special relationships between dads and daughters. His heart was broken for her and what her future would look like.

Her diagnosis was in four parts, ASD (Autism Spectrum Disorder), Dyspraxia and complex learning needs (including dyslexia and dyscalculia). We were surprised that ASD was number one on list but it makes sense when you think how global ASD is for a person’s life.

After taking a breath though, we realised that this was the best thing that could have happened. We had a clear idea of what help could be put in place. The LEA (Local Educational Authority) realised mainstream school wasn’t helping her and this was confirmed as I looked for secondary schools and was basically told by some schools that they wouldn’t take her or they would ask for so much money the LEA would refuse to send her there! Shocking really but understandable. The government have made schools outcome focussed. Great for my NT son who is bright and needs to be pushed but not for those with additional needs.

This is the point at which we were thrown another lifeline in the form of a very small private school who used individualised curriculums. They met with us and like all other teachers saw what a delight our daughter is and that her main need is to be supported and encouraged where she’s at. We got a place for her and instead of starting at mainstream secondary she started there and is still happy!

We have difficult days still but we don’t have to fight to get her into school every day anymore. That’s a huge victory.

You might read this and think diagnosis is the end of the story. It’s not. In a lot of ways it’s the beginning. But now we know the battle we’re fighting. Next week I’m going to ply you with resources that we’ve found helpful. The biggest lesson we learnt is not to be afraid of the diagnosis, not to allow that to become our daughters identity. She is a beautiful, kind girl who has so much to offer the world around her in her own way.

Our role is to support her and give her the tools she needs to survive in a world that isn’t always as kind as she is.

Journey to Autism Diagnosis – Part Four – School Years One to Four

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So last time we finished with being dismissed by the second constultant we’d seen and so we struggled on. Day after day working hard to get our daughter into school. By the time she was in year one I had baby number three and was expecting baby four!

When she was in year one it became clear her teacher was great! He noticed she wasn’t picking up reading as easily as the others in the class and so he arranged for her to have an eye test that looked at her visual tracking. He even applied for the school to pay for it.

When we had the test, the results were a surprise. She was not able to follow text at all, her eyes were flicking all over the place, giving her no chance to actually read. We were referred for treatment, ten sessions at £30 a time. This time the school couldn’t help and there was no such treatment on the NHS. Fortunately family helped out.

I took her fortnightly with a toddler and baby in tow! The treatment was like physio for eyes. Painful at times for her but she worked hard and by the end there was a definite improvement.

The hope was that she would then have a dramatic improvement in her reading and writing. The possibility of dyslexia was floated but we were told she was too young for there to be a diagnosis. When she entered year three her teacher was again very kind but seemed to feel all our daughter needed was encouragement.

With some level of insistence we finally managed to get an assessment for dyslexia at the end of year 3 and her learning needs were discovered to be high but a referral for further help wasn’t recommended nor was any further intervention. Mostly motivated by the lack of money in the school and also the fact that she was well behaved and not causing a problem in class.

During year 4 we had to move house and decided to move schools in spite of the upheaval this would be for our kids. Maybe this change would be the way to get the help we knew we needed.

Up to this point we have been a pain to the SENco at the school, we have requested consultants appointments, we’ve been rejected as it has to come from the school, we’ve spoken to the GP who also said it had to come from the school. We’ve considered paying for a private assessment to find out how we can help our daughter get the best out of school but been told that a private assessment wouldn’t be accepted by the school.

We felt we were out of road. Our daughter continued to be a model student at school and yet not be progressing at all in her learning but hiding it so well the teachers, with the class of 30, weren’t able to focus on the needs of one well behaved child. I don’t blame them, they’re stretched so thin, it becomes those who shout the loudest get the help they need.

But there is hope. Next time I’ll write about what the turning point was.

Journey to Autism Diagnosis – Part Three – Preschool

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We pick up our story when our daughter was nearly 3 and the preschool my son was at, said they would prefer to wait to take her as she wasn’t ready yet. She only started walking at 2 and even then didn’t walk much when we were out and about.

When she eventually started at the preschool we had a wonderful key worker who looked after her. She wrote reports which we still have full of concern at her slow development but already saying how well she interacted with other children, often imitating them. The mask went on early for her.

At home she would often replay the games they’d played at preschool with her toys, rehearsing what to say. She started to get night terrors which often happened when there had been a change in the routine or something new had happened. It meant we stopped her toddler ballet, and the idea of any other clubs, as those days seemed to be the worst.

Preschool got a SEN specialist in to do an assessment and the results showed that she had some additional needs that would mean she would need support when she started school, including a possible diagnosis of dyspraxia, along with issues with speech and language. They referred us to a consultant.

We saw this consultant while she was in Reception and I think this was the hardest appointment we had. At the time, getting my daughter into school every day was a battle. She was exhausted. But once she was in school she was an absolute delight. She behaved perfectly. Which is how she was with the consultant.

He dismissed us as over protective parents. Told us to wait and see how she got on. She seemed happy enough so it would be best to let her get on without interference. I cried that day knowing that my instinct again was being ignored.

If you’ve experienced this, I’m sorry. Consultants are busy and diagnosis of additional needs at this young age is difficult. Be kind to yourself. Trust your instincts and keep asking the school for support. If you’re struggling to get your child in to school on time because they’re exhausted then take them in late and through the office. The more the school sees the battle, the more likely they will get you the support you need. Don’t be afraid to show weakness, be real. These are lessons I’ve learnt from not doing it for years! It was only when my daughter hit year 3 that we started to do this. Learn from our mistakes. Weakness isn’t failure.

Journey to Autism Diagnosis – Part Two – Newborn days

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So our beautiful daughter was born. I felt great afterwards because I’d refused all drugs and so bounced out of bed to have a shower leaving Sean in charge!

Our baby girl wasn’t happy though. First nights with new babies are always rough. I had expected crying but I wasn’t ready for the ear splitting screaming she started. I stayed for the night in hospital as she was born just after midnight and she screamed the whole time except when I was feeding her.

I took her through to the nursery to ask for help from the midwives, as my eldest had cried but not like this. My instinct told me she was in pain. But the midwives just dismissed me saying that it just meant she was hungry. They were clearly busy and a crying baby isn’t unusual. I left hospital as soon as I could the next day.

When we got home though the screaming continued. Sean thought he was going to lose his hearing as it went on all day and all night. The midwife added it to the notes in her red book – ‘very high pitched cry’.

After weeks of this, with hardly any sleep, we were willing to try anything. The health visitors referred us to a consultant and we saw a chiropractor in the meantime. After four months with no change and feeling at the end of our resources we asked our church leaders to come and pray! She stopped screaming that day. The consultant and Chiropractor discharged us and I stopped going to the health visitor. I had lost faith that they knew any better than I did!

It’s worth mentioning here how hard it is to have a baby who cries all day. When you’re out and about and see a mother struggling with a crying baby, rather than offering suggestions, that she’s probably heard a thousand times, it’s so much more helpful to remind her she’s doing a good job, to keep going and that it will get better. I had people think they could help and take her to try their techniques only for them to give up and pass her back. They could walk away but I was left feeling despondent and literally help-less. The best help we received were from friends who took my toddler or both kids so that I could sleep for an hour or so. Such a blessing.

During this beginning part of our journey I made all kinds of excuses for what was happening. First and most prominent was that I’d had a boy first time and so I didn’t understand girls, maybe this was normal. Or perhaps it was my fault because I was so tired all the time and maybe it wasn’t that bad.

You can see from this part of our story that early intervention was minimal and we were leading it with our need. We had no experience that told us maybe we should hold on to the help we were offered. The health visitors didn’t have any suggestions that indicated there could be something more going on beyond what we could see.

I still question today whether if I had pursued help whether some of her difficulties would be easier. This is a breadcrumb trail that leads no where, so if you’re on that trail, look up and walk away. You are the best parent for your child. Love them unconditionally on good days and bad, no matter how tough that is. It’s what will steady them in their own walk through life.

Journey to Autism Diagnosis – Part One – First days

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Over the next few posts I want to share our journey to diagnosis with our daughter. I’ve spoken to several parents who have been on this same journey and I thought it would be helpful to share the struggle we had and in some ways still have. We love our daughter and all her quirks as we love all our kids, my hope in sharing our journey is to offer hope to those in a similar situations.

Where do you start with a story like this? I’m going to take my cue for the first consultant we saw who understood, which took us 11 years to get, they want to start at pregnancy. Which felt like a long time ago, but as it’s where life begins, it’s where our story starts.

I fell pregnant shortly after surgery to remove my gall-bladder, when my eldest was just under a year old. I wasn’t fantastically healthy, even though I was slimmer than I’d been since I was a teenager! But we were super excited and keen to grow our family.

When I was at the beginning of the second trimester, my son got chicken pox and I got a mild case of shingles. Not ideal. We also had to move house when I was six months pregnant! Probably our worst ever house move!

After that though life was pretty straightforward, except that we had to get rid of our car. So when I went in to labour we had to wait for some friends to drive us to the hospital. Everyone assumed it would be another long labour but by the time I got to the hospital it was only 3 hours until she was born.

In comparison to my first that was fast! I think Sean was pretty traumatised by it and for weeks after he said he could still hear my screams! The midwife put in my notes that I was uncontrollable! Pretty funny now but not at the time!

Describing all that to a consultant 11 years later feels like a waste of time, but she added it to the notes. They need the full picture.

Next time I’ll write about those first few days. How all this starts with you questioning whether you’re just a bad mum who doesn’t know what she’s doing.

Routine is King!

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As we’ve had to throw out our usual routine due to self isolation, we have become again aware of how necessary routine is in our lives! Not just because we have a child with ASD but for everyone’s sanity!

I’ve mentioned before how, when I write, I’m a planner but it actually carries across most of life. I like some spontaneity, not too much though! One of the hardest birthdays was before I was married, Sean and my housemate organised a surprise party for me. I couldn’t enjoy the party because all my plans had been thrown out!

Sometimes I wonder how helpful being a planner is, but parenting a child with ASD has made it a gift. We reduce anxiety by creating a plan and where there is a change we ensure as much notice as possible, or we will warn if there is a possible change. It’s impossible to remove all anxiety from life and if we did we wouldn’t prepare our kids for the real world, but having some structure teaches them some disciplines for the future.

Things we do include writing out a meal plan. This helps as food is big in our home! It also helps with making a shopping list. I get the kids to give some input and if I’m making a meal I know they don’t like I’ll plan a pudding they love!

We like having guests to dinner so we plan certain evenings when they will come. I can then set expectations, letting them know if there will be kids they can play with or whether they will need to let the adults talk while they entertain themselves. (So you can imagine isolation has been tough! Every day the same question “Who’s coming for dinner?” Everyday the same answer “No one!”)

As we’re heading into school holidays I will make play dates and try to mix up who we see so that each of the kids has someone their age. We plan walks, garden days, beach days, baking days and maybe a TV day!

We have a ten day camping trip planned and the kids know each day there is the same! We may have a water fight one day, I take my oldest daughter to look around the charity shops and another day a BBQ. But everyday, there’s the park, the woods and a walk. (Every year we come home with stories and I’m sure at some point there will be a post with the funniest!)

So routine may be hard work to put together at times but I know that for our family it brings such a helpful structure and a sense of stability. Whether or not you have a child with additional needs, the boundaries and routines we set for them give them security. Don’t be a slave to your routine but at the same time if you don’t plan in fun it won’t happen! That includes cooking something interesting for dinner!

Rest

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This week coming I have time off. I’m so looking forward to having a rest. But it’s made me ask the question ‘What is rest?’.

I’ve realised the answer is different for everyone and different in every season of life. For Sean, it’s playing his guitar and getting out his loop pedal! Or lighting the BBQ and cooking some meat. We all get to enjoy that one!

For me it’s books and sunshine! I haven’t had much time to read just for fun recently and so that’s what I’m looking forward to.

I’ve listened to some teaching on slowing down and it makes me realise how busy we are as a society. We wear our busyness as a badge of honour. We try to out do one another with how much we’re doing. No one’s boasting about the really good day off they had!

Rest is vastly under estimated and under appreciated! Rest isn’t only found in staring at a TV screen. The best rest is found in the things that give you life and energy.

So that’s what I’m dedicating this week to. Everything that helps me to take a deep breath and pause. I’m throwing comparison out of the window and embracing doing whatever so can to give life not just to me but to the kids as well.

Fresh air, food and friends! And most importantly books!

A great book on this subject is ‘In Praise of Slow’ by Karl Honore or ‘Three Mile an Hour God’ by Kosuke Koyama.