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Is My Child Autistic?
Rachel Stock • 16 July 2021
Harry, Me and the Early Years
Before I get into sharing the early years with Harry, I have to say that I’m so proud of him. I never thought we’d be where we are today.
Harry was born almost 6 weeks premature and weighed 5lb. Until he was 3 months, he looked like he still needed to grow into his skin. We used to call him Harry Sparrow. He was born without the sucking reflex and so I struggled to feed him and would express my milk and feed it to him through the tiniest of bottles. He would sick up most of the time and he would never settle after a feed even with lots of winding.
I remember by the time I settled him at night, it would be time for his next feed. He would go rigid after each feed, I couldn’t put him down, he was never contented to lie on his play mat, he had to be upright and moving not sitting. The only place he seemed happy was in his baby bouncer, which he absolutely loved but according to the user guide there was a time limit. I remember wishing I could leave him in it all day.
I felt a lot of pressure to do things right, but I didn’t really know what “right” was. It was so hard, I wasn’t enjoying motherhood and I felt guilty about that. He didn’t seem content in my arms, so I felt that he sensed my resentment and I began to blame myself. I felt like a failure as a mother.
The health visitor said “all babies are sick, it’s normal.” The sleep deprivation began to take its toll, my body clock was all over the place and when Harry was about 6 months, I remember watching someone on BBC Breakfast talking about post-natal depression. A list of symptoms appeared on the screen and as I read it, I thought “that’s how I feel” so I went to the doctors who prescribed anti-depressants. I started to feel a bit calmer but still not right.
When I began weaning, Harry ended up in hospital with blood in his nappy. His nappies were generally awful anyway, never hard stools always soft and very smelly. He was eventually diagnosed with reflux. I felt a huge relief but frustrated and disappointed it wasn’t picked up earlier.
As he got older, I remember being with our NCT mums and their children and they would all play together and Harry would always go in the opposite direction. I’d try to encourage him back to where the other kids were, but he’d turn around and run off again. He tried to escape from the library sing along group, he’d try and climb over the gate in the playground. I used to call him Harry Houdini because he was always trying to escape and run in the opposite direction. He would take little notice of other kids around him. We began to withdraw from social meet ups.
In the car, he would scream if I didn’t put on the CD he wanted. REPEAT REPEAT REPEAT, AGAIN AGAIN AGAIN and if I put something else on, he would absolutely lose it and scream constantly. Sometimes, he would say “I want to go that way” if I turned right in the car because he was expecting me to go straight on it would set him off screaming. If he woke up somewhere he wasn’t expecting he would scream. It was awful. I felt so on edge all the time.
Music has always been his passion. At 18 months old, I found him in the lounge raving to the Chemical Brothers. I’ve always said he was born in the wrong era! I remember walking into a local shop, Harry was in his push chair and he said “black eyed peas” and sure enough the black-eyed peas were playing on the radio. Both the shop assistant and I stood there in disbelief looking at each other. He was about 2 years old.
At 3 he started nursery. I was relieved to have someone else look after him for a few hours a few times a week to be honest, I’m not sure they felt the same. They struggled to get him to join in. Harry would hunt out the one book on the bookshelf that had a CD tucked in the back cover and demand that it be played. The nursery assistant would say “we can do that at 11 o’clock Harry” and so he would sit and look at the clock until 11am and wouldn’t engage in anything else.
One day the SENCO at Nursery called me in and said “how do you feel Harry is progressing?” I burst into tears. Looking back, I wish I had been that mum who knew exactly what was going on and had said, yes my son is Autistic and I’m proud of it. But I didn’t understand what was going on. I thought it was my fault, my failure as a mother. Obviously, I now realise that’s just not true. Harry was born Autistic. It was nothing to do with me as a mother.
The nursery staff suggested that we ask a health visitor to observe him in the nursery setting. I agreed and I remember the health visitor saying “well, I don’t think he is but I’m going to refer him anyway just in case.” We had a few appointments with a Paediatrician and because my cousin works with autistic children, she suggested we request an ADOS assessment, we did, he got one and was diagnosed on the spot. My husband and I were in shock! We expected them to say “he’s borderline” but there was no doubt, Harry was diagnosed with Autistic Spectrum Disorder or ASD which I now like to call it Amazing Special Different.
The Doctor said for our own research purposes we should look up Aspergers Syndrome, which is on the high functioning end of the autistic spectrum, but there was nothing else they could do. They gave us a leaflet for the National Autistic Society and some courses for parents of newly diagnosed children.
I remember my husband going straight back to work when we got home, he just didn’t want to deal with it. I sat and cried and wondered what his future was going to be like. I felt scared for him, what did this mean? would he be able to be independent? would he always need us? what would happen when we weren’t here anymore, who would look after him? All sorts of fears and questions I had no answers to.
We signed up to the Early Bird course, through the National Autistic Society, for parents of preschool newly diagnosed ASD children. We were lucky to get on the course as it was over-subscribed. Attending the course really opened our eyes. Other parents were having a much harder time than us, some parents were still in denial even after receiving a diagnosis and some parents just seemed completely overwhelmed. We took on board some of the strategies that worked but at the end of the course I realised that I was going to have to continue researching if I was going to give Harry the best possible opportunity to thrive. So that’s what I did. I began my journey reading book after book, researching online, taking it all in and considering our options.
The first book I read, which I would recommend to any parents whose child is on the Aspergers end of the Autistic Spectrum, was The Complete Guide to Aspergers Syndrome by Tony Attwood. This book really helped me to understand what Harry was experiencing and explained some of the behaviours we found difficult to deal with. It helped me to understand him better and I became more understanding of him and more empathic.
I then discovered I had a passion for it. I loved learning about it and just kept reading and reading. Then found a book that would change things forever. If I could remember the name of it, I’d share it but it’s on my old Kindle which is now broken and I’m not sure how to extract it. The book was about the impact that non cooked diary and gluten has on the brain. It was written by a mum of an autistic boy and how she had helped her son's autism. So, I decided to give it a try. I started replacing cow’s milk with diary alternatives such as almond milk and soya milk and replaced pasta and pizza with gluten free options. Within weeks Harry’s Stagecoach teacher said “what have you done? He’s like a different child.” Stagecoach has been a great source of social interaction for Harry. He's always loved the stage, singing and dancing and acting. He's very determined to be an actor, TV presenter, Author when he's older.
After we reduced gluten and non-cooked diary, we started to notice that he was no longer hand flapping or staring at things that spun and zoning out as much. His guts were better, less diarrhoea, less tummy pain (which I remember were particularly bad after eating crumpets). There were obvious improvements in his sensory processing. Things like hand dryers were suddenly ok and he wasn’t so bothered by the temperature of the bath (couldn’t ever get him in the shower). He didn’t mind having his hair cut, which had always been very stressful. The change was incredible!
Now I really notice a difference in his sensory processing, behaviour and gut if he has too much gluten or uncooked diary, so we limit it as much as possible. There are also certain colours that impact his behaviour, so we keep an eye on that too.
I'm not saying that Autism can be cured. Far from it! Autism is a neurological developmental condition but if there are interventions that relieve the often very challenging behaviours associated with Autism, why wouldn't you try them?
If you'd like to discuss this in more details or you would like help with tailoring a meal plan, contact me via www.asdparentcoach.co.uk/contact or E: help@asdparentcoach.co.uk
The Key to ADHD I’ve always suspected our daughter has ADHD as well as Dyslexia. I call Jess the Tasmanian Devil, she is a whirlwind who LOVES to talk but finds it difficult to listen and focus. We went for a Dyslexia diagnosis first to help her progress academically and decided to see how she settled into Secondary school before we approached the ADHD. We also wanted to talk to her about it and let her lead whether she wanted to go for an assessment or not. We are still discussing this and we’re currently in the first term of secondary so time will tell. You can read our Dyslexia journey in my previous blog. Receiving the Dyslexia diagnosis really helped her to understand that she wasn’t stupid (as some of her peers had called her and some of her teachers had made her feel) but there were reasons why she found reading, writing and spelling more challenging. Jess is exceptionally creative but unfortunately this was not a focus in her infant and primary schools. Now in secondary, there are more opportunities for her to shine through the arts, drama, singing, music and DT. Historically and even now, the school curriculum is not geared towards neurodiverse kids. In fact, it works against their way of learning. It’s all about reading, writing and spelling so Dyslexic learners are at an immediate disadvantage and then throw ADHD into the mix, imagine having to sit down in the classroom for hours on end focussing and concentrating without moving when the only way you learn is through doing, words just disappear! I just read a post by someone diagnosed with ADHD that said, “I have the same number of ideas in one day that you have in one month”. Can you imagine that? These ideas do matter! They are essential for the development of our world. If we could harness those ideas, imagine the progress we’d make. But instead, whilst you’re meant to be focussing and concentrating on your schoolwork, you’ve got all these ideas running through your head that you have a need to express and can’t. Another example, autism which primarily presents as sensory and social challenges, students are expected to communicate and socialise within a loud, noisy, socially demanding school environment. A while ago, I asked my daughter to draw how her brain feels. I was shocked with what I saw. It was utter chaos with squiggles and frantic lines everywhere and this really gave me an insight into how she struggles moment to moment. This is what she copes with every day and in my opinion does remarkably well. She is disorganised, chaotic, chatty, hyperactive, impulsive AND she is incredibly creative and has some amazing ideas. She says she can see and feel things others can’t and I can relate to that. Jess says she can see how things fit together like a puzzle. I’m unsure whether this is the dyslexia or ADHD, probably both conditions contribute to her unique abilities. Jess has an amazing talent for singing and acting but she hates not being able to do things well immediately, so gives up quite easily apart from singing and acting, which I hope she never gives up. She says she feels calm when she sings so she sings ALL THE TIME! She also has sensory stuff going on. She’s always been a fussy eater but when transitioning to secondary school it got worse, so I’m keeping an eye on that trying to support her by educating her on the importance of healthy food whilst not putting pressure on her at the same time. Everything’s a juggling act! We’ve current got a mixture of hormones, ADHD and Dyslexia, so mornings can be tough! But when things get tense, we always apologise, and we talk about how we’re feeling. She says she feels like she can talk to me about anything, and my autistic son says the same. This is all I’ve ever wanted so I really hope they mean it and continue to talk to me about the stuff that matters particularly throughout their teenage years. An ADHD’er has lower levels of dopamine, which means they are always looking for something to give them that feel good hit. Recent research is linking ADHD and addiction. So, how can we naturally increase dopamine levels… by listening to music, exercising, eating dopamine rich foods, taking certain supplements, yoga, meditation, playing with pets, getting out in nature, gardening and doing the things we love. If a combination of all the above does not help, there is medication which I know lots of ADHD’ers rely on to keep them from sinking into a mental health crisis. Whatever works for the individual is right for that person. I’m not against medication if it works for you because for some people it’s vital for their mental health. Unfortunately, there is currently a shortage of ADHD medication so now is the time to try the natural way. If you need help with this E: help@asdparentcoach.co.uk Both my kids are learning with some supportive adjustments. They can both get overwhelmed at times, but we work through it together. I try to encourage them both to keep a journal but they’re not so keen! Jess avoids writing because of her Dyslexia so she learning to touch type. I’ve also showed her deep breathing techniques and although she gives me the impression she won’t do it, I have caught her in her room just before bed taking long deep breaths. In my opinion, it’s all about arming our children with strategies to self-regulate whether that be through focussed breathing, exercise, healthy diet, music, supplementation, talking, social time, creative interests, reading or curling up on the sofa under your favourite blanket watching your favourite movie. Whatever works best for your child! ADHD’ers also need “scaffolding” which is a term used for creating a supportive structure around the individual to help them function and succeed. Strategies such as reminders, calendars, timetables, to do lists, planners, diaries are all tools that provide the structure that enable an ADHD’er to arrive on time, plan, organise and prioritize. There are some great apps out there now that enable ADHD’ers to thrive. We may go for the diagnosis at some point, but I want her to be ready for it and feel like she needs it rather than me forcing it when she’s not ready. My son was 4 when he received his autism diagnosis. At the time it was impacting his self-esteem, so it was the right time for him. On the surface, my daughter has so much self-esteem it’s sometimes frightening, although I do wonder if there’s some masking going on. We always worry us parents, it comes with the territory. I’d love to hear your stories of your neurodiverse children, please share, it helps everyone! Thanks for reading my blog. Feel free to read my previous blogs and comment if you’d like to share. For help and support for your neurodiverse family E: help@asdparentcoach.co.uk
Diving into Dyslexia Firstly, apologies for my silence over the last 11 months. I’ve been busy coaching clients, studying Counselling Level 3 and Self Harm and Suicide Prevention and busy helping my daughter with her dyslexia diagnosis and schoolwork. I remember when Jess was in reception, I went into help one day and noticed that when all the children were sitting on the mat putting their hands up and answering questions, the teacher kept asking the same children repeatedly. Jess occasionally put her hand up, but I could tell she was being overlooked. When the teacher finally gave Jess a turn, she gave the answer to the previous question. At that point, the teacher had a choice how to respond and instead of saying “That’s right Jess for the last question well done, but can you answer the current question too, do you need me to repeat it?” but what the teacher actually did was rolled her eyes and said “oh dear” with a disapproving look on her face and went straight to another child. I was fuming but being unsure of myself and how I’d read the situation, I chose not to engage with it. I now wish I had spoken to the teacher afterwards and highlighted what I had observed but we’re not there to observe the teachers, we’re there to help! In year 1, Jess’s teacher rolled her eyes and tutted when we arrived at parents evening and one of the comments I remember was “she’s awful when it comes to tidying up!” She was six at the time. I had a sense back then that Jess was dyslexic as it's in our family and I'm possibly dyslexic too. Her reading was slow compared to her brothers and academically she was quite different to him too. They’re both highly creative but in different ways, Harry musically, Jess artistically and both love performing. When Jess moved from infant to primary school she started to struggle with friendships. They would call her an idiot and a liar because she used to get her words mixed up. She meant one thing and would say another. It was heart breaking to see her going through such an emotional rollercoaster. At the same time, I had received a stage 3 cancer diagnosis and was going through treatment. It was quite a challenging time. In year 4 I asked the SENCO if they could screen Jess for dyslexia. Her response was quite surprising, “We can screen her but even if she is dyslexic, she won’t get any support.” I couldn’t believe my ears, how can a SENCO say that to a parent! I decided to study a Dyslexia Diploma to help me feel more confident about my suspicions but also to support my career coaching parents with neurodiverse children. Then COVID hit. It became obvious that Jess preferred being a home. It didn’t seem to bother her that she wasn’t seeing her school friends. She had other friends she would play online with which gave her some social time. I worked with her on a one-to-one home schooling whilst studying a dyslexia diploma. Jess did amazing work during COVID, receiving an award from school on her return. However, when she went back to school in year 5, she started to fall behind. This is when I decided it was the right time to get the diagnosis. Having completed the dyslexia diploma, I recognised the signs, so my husband and I agreed to go for a private assessment. From the moment I gave the SENCO the full report and asked her to feedback what extra support they were going to give her, highlighting that she needed a multi-sensory approach and access to handouts and supportive equipment, the SENCO started to take notice. She also had a great teacher in Year 5 which really helped and who was onboard with the multi-sensory learning strategies. Jess came home one day and told me her teacher had pulled a few of the children out of class and danced along to music whilst saying their times tables aloud. I was so impressed, this was exactly what she needed. Jess had a mixed reaction to her diagnosis. I talked to her during the process and asked her whether she’d like to go ahead with the assessment, and she said she would. When she found out she was dyslexic she cried which was hard to see. During my study, I discovered a charity called Made by Dyslexia which is working hard at changing attitudes towards Dyslexia. Together we watched the videos of the celebrities who have dyslexia including Princess Beatrice, Orlando Bloom and Keira Knightly who had all struggled at school and share their stories about how tough it had been but that it had led them to be remarkably successful in their chosen career paths. Gradually Jess has become proud of being dyslexic in fact she’s now Chair of her School Council and her mission is to make the school more dyslexia friendly. I tell her every day that she’s amazing and that I’m proud of her. This is important. Jess is now in Year 6, she’s caught up with her maths and reading, we’ve just got to work on her writing skills. Her handwriting has come on so much and now it’s just punctuation, spelling and writing structure that needs work, so we’ll be working on that next. Jess has also started a touch-typing course which is free with www.typing.com There’s also a myth that if you get your child diagnosed privately that you may need to get it done again in the future when they go to college or university as not all school settings accept private diagnosis. This is just not true. Some private schools try to do this but there is no legal reason any school, colleague or university can reject an official diagnosis if the person who conducted the assessment has the relevant qualifications and is registered with the British Dyslexia Association. Personally, I think all children could be screened for Dyslexia as early as Year 1. I know Matt Hancock was talking about it before he went into the Jungle! I could tell that Jess wasn’t as engaged as other children. I could tell that Jess was struggling with her self-esteem. So why couldn’t the teachers see it? Why aren’t they trained to spot this? Historically teachers appear to assume that it’s their home life that’s the problem if they’re unable to concentrate, but this is just not true either. Instead, they could structure learning according to different learning styles. Children who struggle to focus and concentrate need support as early as possible, so they don’t struggle with their education and self- esteem. Please share your stories and comments below so we can keep the conversation going. If you think your child might be dyslexic and would like to talk to someone who understands, E: help@asdparentcoach.co.uk
It’s been a while since my last blog and that’s due to being busy coaching parents with Autistic and ADHD children, as well as studying to qualify as a Neuro Linguistic Programming Practitioner (NLP). I’m almost there, which is very exciting. What is NLP? NLP is a psychological approach to help people overcome and change negative behaviour patterns. The last few months I’ve spent time reflecting on the last few years and how much I’ve achieved. I’m not blowing my own trumpet here, but I do think it’s worth sharing. 4 years ago I was really struggling to decide what to do about the business I owned. It had been very successful at one time, a women’s weight loss and fitness centre, but it was so much more than that! It had become a struggle to cover the costs of the gym and continue to pay staff as well as keep the members happy. I was terrified of getting myself and my family into debt. I also didn’t want to let my staff and members down. They all loved the club so much. For some, it was lifeline and I felt so guilty I was going to have to take it away from them. I remember talking to a friend about it and once we’d established that it was inevitably coming to an end, she suggested that I start to think about what I wanted to do next and start working towards something positive to counter the disappointment that was to come. So that’s what I did! I knew I wanted to provide support to parents of children with ASD and although I’d been researching to help our son, I knew I needed some qualifications to back up my knowledge. So, I started studying Autism, closed my business and took the summer off to celebrate my 50th birthday with several parties and a road trip around Europe with my family. Phew! On my return, in September 2019, I was diagnosed with stage 3 Melanoma which had spread to my lymph nodes. I can’t put into words the darkness that consumed me and my family, but what I can say is that I found a strength that I never knew I had. My husband was my absolute rock, my children were incredibly resilient. I’m so proud of them. My parents, although it broke my heart to see them worry about me, were amazingly supportive and family and friends just couldn’t do enough to help. I felt so loved and this really got me through the dark times. Thank you! I’m now clear – YAY! I’m still on Immunotherapy but I’m hopeful that treatment will end next year. Since being diagnosed, I’ve achieved eight diplomas and have been coaching parents to empower their neurodiverse children to be the best version of themselves. Diplomas achieved since diagnosis: Autism ADHD Dyslexia Cognitive Behavioural Therapy Mindfulness Gut Health Life Coaching Mental Health Awareness My oncologist says I’m an inspiration. I took the compliment although I think he’s the inspiration! I have a purpose that I can focus on for the rest of my life. There is so much to learn and so much research going on currently about the gut microbiome and brain connection and neuroscience which is just so exciting. So, what is the microbiome? The microbiome is made up of trillions of good and bad bacteria, viruses, proteins, enzymes and other microbes. These microbes are found in our skin, nose, mouth, throat and throughout our body including our digestive system. The microbes that line our intestines are responsible for breaking down all the food that we eat and absorbing nutrients. Some Doctors are calling the microbiome the new organ. Did you know that the microbiome is not currently included in western medical training? So, what happens if some of these microbes are damaged? This can lead to leaky gut or dysbiosis, inflammation in the body, damage to the immune system and brain. WOW! I know, that’s what I thought. Check it out for yourselves. Copy and paste the following into your search engine: What Role Does our Microbiome Play in a Healthy Diet? - with Tim Spector - YouTube Gut Health: Everything You Need to Know - Dr Rangan Chatterjee (drchatterjee.com) Autism: Getting To The Root Cause With Functional Medicine - Dr. Mark Hyman (drhyman.com) How can we repair our microbiome? It’s simple but not necessarily easy. The most important change you can make is by eating at least 30 plants every week. This includes a variety of coloured vegetables, plus herbs and spices. Fruit is important but go easy, it’s full of naturally occurring fructose. I once new a woman who ate far too much fruit and was diagnosed prediabetic and had to reduce the amount of fruit she ate. DO EAT FRUIT BUT STICK TO 2 PORTIONS PER DAY that’s 14 of the 30 plants so that leaves 16 servings of vegetables plus add extra herbs and spices. That’s the simple bit. It’s not easy because most of our kids don’t like vegetables. If you are lucky enough to have a child that loves fruit and veg then good for you! If your child doesn’t like fruit and veg then you’ll need to disguise it. Home-made smoothies, pasta sauces and kebab sticks have been winners in our house. Our son, Harry, had bad gut issues when he was young and after his ASD diagnosis I read a book about the Gluten Free and Casein Free (GFCF) diet. I decided to cut down on uncooked diary and gluten and the change was amazing. Even now (he’s 13) if he has too much, we notice a difference not only in his gut but also in his behaviour. I’ve mentioned in my previous blogs that I blamed myself for Harry’s differences when he was young and since learning about the gut microbiome and the fact that I have had cancer could it have been my lifestyle that impacted my microbiome that led to Harry’s autism and me developing cancer? Maybe! Am I going to blame myself? NO! Instead I’m going to focus on helping him, helping myself and helping others now and in the future. That’s a far better use of my time. So I find myself at 52 years old, more passionate and qualified than I’ve ever been before, a cancer survivor, a mum of 2 amazing children and a purpose to help as many people as I can. I feel very lucky. If you would like further support, please E: help@asdparentcoach.co.uk
WOW we really had a great summer, but like most families it did come with its challenges. We used to avoid social situations when Harry was young, but not anymore. We always spend time and go on holidays with lots of people, so he’s had to learn to notice, accept and get on with other people. Equally, we have amazing friends who accept Harry for who he is and don’t judge him for his differences. Although we’ve come a long way in relation to Harry’s autism (you may remember reading my last post that we cut out non-cooked diary and switched to gluten free pasta and pizza bases which reduced stimming, spinning and meltdowns) we still all find it more difficult during the holidays because there’s less structure and we have less control over his diet resulting in him eating more gluten and diary. Harry turns 13 this week and I feel it’s important to encourage him to make his own decisions (within reason of course!). Telling him he can’t have an ice cream whilst on holiday and all the other kids are having ice cream just doesn’t work anymore. He needs to recognise how certain foods affect him and he does, to a certain degree, but sometimes he just wants that salted caramel ice cream more and quite frankly who can blame him. When he eats more non-cooked diary and gluten, his stimming behaviour returns. This is possibly caused by certain proteins (casein & gluten) not being broken down properly (due to damage to the gut microbiome otherwise known as dysbiosis or leaky gut syndrome) and affecting the brain and in turn affecting the neuropathways and sensory processing (this is my theory anyway and there’s lots of research going on in this area currently). This results in more tics, stimming, he becomes more fixated on things, won’t let things go, becomes more lethargic and withdrawn disappearing into his own world but can also lose control and show erratic behaviour. So, after a holiday of ice creams, crepes and pizzas, it's time to refocus and eat healthy. We'll cut out non-cooked diary and opt for gluten free pasta and pizza. From experience, I know this will help him considerably, especially as he goes back to school and needs to concentrate and focus. I’m also encouraging him to run, cycle or go climbing a few times a week as he doesn’t like team sports. He did get into running a while ago and the difference was unbelievable. He became fully engaged and chatty immediately after his run which was maintained for the rest of the day. This is because exercise nourishes neurotransmitters in the brain. If only there was more time (or motivation) for a run before school. In the early days, we did deep pressure and resistance exercises before school to help him focus. Now I encourage him to do press ups, push ups, burpees, squats and sit ups anything to stimulate the nerve/muscle connection. The other area that is impacted is his social skills. He struggles to read other people and social situations and takes things very personally which means I spend quite a lot of time talking him through sticky social situations. He gets very down on himself when others don’t appear interested in him. I tell him that relationships are a two-way effort, so he needs to put in the effort to get the effort back but he’s quite often hanging around on the edge of social groups, although this is improving. Harry struggles to understand why others engage with his 9-year-old sister more than him, he thinks it’s because they like her more. It’s tricky but it just takes effort and repetition to help him understand what’s involved in being socially able. There’s a definite need for social skills support particularly for autistic children in and outside of schools. Please do comment if you know of any good ones. I’ve also just bought him this book which I’ve heard is good so hopefully this will help him to understand social rules better. He’s going into year 8 so it’s only going to get more challenging for him so I want to give him as much support as I can. https://www.amazon.co.uk/gp/product/1517309328/ref=ppx_yo_dt_b_asin_title_o00_s02?ie=UTF8&psc=1 I’ve always tried not to let him hide away in his room (or tent when we go camping) for long periods without knowing exactly what he’s doing and encourage him off his devices. It takes effort but it’s worth it. Although I have to say, during lockdown devices were a life saver. Harry does love his music, so we always give him time to listen to his favourite tunes. Harry’s best friends are also either autistic or adhd, but he has made some new friends at secondary school who, as far as I know, aren’t diagnosed and although there were some teething problems, he seems to have settled in well with this group. Fingers crossed this continues, but I check his phone regularly monitoring WhatsApp and helping him to navigate the social media world. Some parents may think I’m helicopter parenting for interfering too much, but not only do I not much care what other people think, I also disagree. Harry needs my help in areas that other child may not need the support and if I didn’t support him in those areas, he won’t mature to be a sociably able individual. Being socially awkward as a child does not have to result in being a socially awkward adult. The more effort you put in early on, the better chance our children have of being able to cope with the social demands that will inevitably be put upon them in adult life. I cannot emphasise enough how important early intervention is in helping autistic children to thrive. Behavioural support, dietary changes, exercise, mindfulness and learning techniques can all help autistic children to become the best version of themselves. I believe that every child is Amazing Special Different with or without a diagnosis. For further information and support E: help@asdparentcoach.co.uk
Before our son was diagnosed with Autism, I used to spend hours online researching to find a reason for his behavioural challenges. He was different to his peers. I knew there was something going on, so when he was diagnosed there and then at the ADOS (Autism Diagnostic Observation Schedule) assessment, I felt a huge weight lift from off my shoulders. I had something to work with, a diagnosis confirmed it wasn't my fault. I could learn exactly how to help him. I felt empowered. Autism is a learning difference that presents particularly from a social capability. There are 3 areas that generally show impairment: 1. Social Imagination – restricted behaviours and repetitive actions 2. Social Communication – restricted verbal communication and comprehension 3. Social Interaction – restricted intuitive social skills This is known as the “triad of impairments” and is the criteria required to receive a diagnosis. Read more by opening the following link: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences I now view autism as a gift not a disorder. My son has many strengths because of his autism such as maths, music and drama. He's also very sensitive, intuitive and has a very kind soul. He feels things others may not which sometimes causes him to feel overwhelmed. He also has some “not so strong strengths” which he needs more support with, such as hand/eye coordination, art, design technology and sports but that’s ok. We can’t be good at everything! Should I get my child diagnosed? Some parents are reluctant to get a diagnosis because they view it as a label that may hinder their child in the future and it's a personal choice of course. However, in my experience, a diagnosis opens doors and has not held our son back. A diagnosis also gives your child a reason for why they feel so different. It also means that your child’s school can apply for additional support such as an EHCP (see below) and more time allowed in exams. How do I get my child diagnosed? There are various avenues. A GP or teacher can refer your child for an assessment with CAMHS, the NHS Mental Health Service. Read more by opening the following links: https://youngminds.org.uk/find-help/your-guide-to-support/guide-to-camhs/ https://www.nice.org.uk/about/nice-communities/social-care/quick-guides/assessment-and-diagnosis-of-autism-what-to-expect You can also seek a private assessment such as from the Lorna Wing Centre for Autism https://www.autism.org.uk/directory/t/the-nas-lorna-wing-centre-for-autism Private versus NHS - the main differences are cost and waiting times. You'll be seen quicker in the private sector but it'll set you back several thousand. If you decide to go down the NHS route, you will need to firstly approach your GP (preschool) , School SENCO (Special Educational Needs Co-ordinator) or directly through CAHMS but the waiting lists can be long, 18+ months, unless the situation is deemed critical by CAHMS in other words there is a threat to life. What is an EHCP? An Education, Health and Care Plan can be requested by an individual under the age of 25 or their parent, carer or teacher to identify any additional support that may be required which is beyond what the educational setting is able to provide. The application process takes about 16 weeks and starts with making a request to your local authority. The decision will be made after 6 weeks and more likely to be approved if your child has a diagnosis. https://www.twinkl.co.uk/teaching-wiki/ehcp-education-and-health-care-plan https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help Is Autism Curable, Preventable or Reversible? Autism is described as a developmental learning difference which means it’s not curable. There are many in the autism community who are very offended at the notion that they can or should be cured. They are proud of who they are, and rightly so, and should not be made to feel this way. However, there are interventions that can reduce the sometimes incredibly challenging behaviours that present with autism such as sensory overload and sensitivities, emotional outbursts, repetitive behaviours, lack of motivation and friendship difficulties. There are various areas of research, one which is of particular interest to me is the gut/brain connection and the casein and gluten free diet. I’ve seen a spectacular difference in my son’s behaviour since reducing non cooked diary and gluten as well as other toxins from his diet and would welcome the opportunity to talk to you about this in more detail E: help@asdparentcoach.co.uk or M: 07711933849 Will my child be able to live independently in adulthood? The answer to this question is not black or white or yes or no but the key is early intervention. With the right behavioural, dietary, exercise, stress reduction and learning style interventions, your child may be able to lead an independent life. Some recommendations are: • Teach them how to cook and clean up after. • Encourage them to think for themselves “what do you think happens next?” • Encourage them to help you with jobs such as gardening or cleaning the car. • Talk to them about what you are doing and why you are doing it. • Try to explain the reasoning behind your decisions, ask them what they think. • Repetition is key don’t give up if they haven’t got it after a few times, keep going! • Eventually you will be able to allow a little bit of independence such as delivering a letter or popping next door to borrow an egg and gradually extend it to popping to the corner shop. • If your child is non-verbal, keep talking to them, encourage them to write or draw their response. Should I send my child to a specialist school? After our son’s diagnosis, we were advised by professionals in the field to send him to a specialist school, but we wanted him to believe that he could, rather than he couldn’t. So, we decided apprehensively to go for the local (rather daunting) mainstream school. Don’t get me wrong, he has had his challenges, especially socially but over time we have built up his confidence, taught him social skills and he is now thriving in secondary mainstream school. He has friends and I couldn't be more proud of him. For further help and support, get in touch via E: help@asdparentcoach.co.uk M: 07711933849 Rachel Stock Founder ASD Parent Coach Dips Nutrition, Fitness, Coaching, ASD, ADHD, Dyslexia, CBT, Mindfulness
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