Gifts for children with ASD

I have seen this a LOT recently - 'Gifts for children with ASD' or 'Are you stuck? Perfect gifts for children with ASD' etc. It makes me really sad. 

Not only are there these headline style adverts targeting parents of children with autism, but also a plethora of posts on social media from parents, asking other parents what they should get their child for Christmas, because they have ASD and don't play with toys or are sensory seekers etc.

from Pinterest https://uk.images.search.yahoo.com/images/view;_ylt=A2KLj.tEmTZagVkA1mOe3olQ;_ylu=X3oDMTIyamVqNWk3BHNlYwNzcgRzbGsDaW1nBG9pZAM5ZWE4OWViYmNjY2IxOTMwMTZiNTJhZDBmZTZmZjA1MgRncG9zAzYEaXQDYmluZw--?.origin=&back=http%3A%2F%2Fwww.swagbucks.com%2F%3Ft%3Di%26q%3Dchristmas%2BASD&w=397&h=397&imgurl=s-media-cache-ak0.pinimg.com%2F736x%2F53%2Ffa%2Fda%2F53fada6cdf0b7e35facaf41ec128f046--christmas-shirts-christmas-christmas.jpg&rurl=https%3A%2F%2Fwww.pinterest.com%2Fpldenning%2Fautism%2F&size=32.1KB&name=88+best+%3Cb%3EAutism%3C%2Fb%3E+images+on+Pinterest&p=christmas+ASD&oid=9ea89ebbcccb193016b52ad0fe6ff052&fr2=&fr=&tt=88+best+%3Cb%3EAutism%3C%2Fb%3E+images+on+Pinterest&b=0&ni=162&no=6&ts=&vm=p&tab=organic&sigr=11bm6esue&sigb=11d0f9plh&sigi=13lhoc6u0&sigt=119omepgo&sign=119omepgo&.crumb=BQt65bLZZRl&hsimp=yhs-prodege_001&hspart=prodege&type=search_6&vm=p&param1=12903760&param2=27831256&param4=1603411337

I am no expert. This is only my opinion, but I feel deeply upset for these children. 

We were looking for pantomime tickets a few weeks ago and came across a listing for 'autism friendly' shows. Further investigation revealed that these have all the fun aspects of the pantomime removed, all the parts that make the pantomime a pantomime, leaving a bland, lack lustre show that would still scare my children and be just as overloading for them as the original show, just without the fun parts. 

Those of you who have read my posts to now will know I have three children, all of whom have autism diagnoses, all of whom have sensory processing difficulties, and all of whom are children. Yes, that's right, they are still children. I wish I could shake some of these parents and remind them their children are children. Just because our children have ASD it does not mean that they should only have a blanket and a chewy necklace for Christmas. Equally, it does not mean that they should have nothing in order to save their anxiety over Christmas presents. The NAS has information to help guide families and children through the changes of Christmas and the anxieties this can bring: http://www.autism.org.uk/about/family-life/holidays-trips/christmas.aspx

Before you rush to the comment section, please think about this. I know all children, families and parents are different. Indeed, many do not celebrate Christmas for various reasons, unrelated to ASD. I am aware that some children do not like surprises or secrets and want to know exactly what gifts they will be having before they get them. I know that families have widely varying finances and budgets, and I am aware of just how wide a spectrum ASD is. But....they are children.

When you think about the anxieties that are caused by change, and not being in control, then you can easily see the challenges of Christmas for a child (or adult) with ASD. Houses and street look different, there are new lights everywhere, shops all look and sound different, smells are changed, people wear different clothes to normal, programmes on TV are different, food changes, boxes and packaging looks different, adverts on TV and the radio are all geared towards Christmas- the list goes on. Even their own home changes- no matter how sensitively or minimally, it still changes. There is no escaping it for them, and children react in different ways to these changes. There is no denying it is a stressful time for all those who have or live with those who have ASD. However, that does not mean that we should further single them out as different by subscribing to the advertising reinforcing that message.

When I think back to my childhood, specifically to Christmases as I was growing up, I always struggled with the social aspects of having people in my house who were essentially strangers, of having to wear ridiculous clothes that itched and felt terrible, I hated the smells of Christmas dinner and then the alcohol and people smell that is inevitable when you cram 14 people into one room to eat a long drawn out meal. I never understood  the pomp and circumstance that surrounded our family Christmas- and indeed boxing day- each year, and very often would receive gifts that I honestly did not want, need or know how to receive, but I never cared. I could sit there with a little pile of gifts, whilst everyone else did the same, opening mine quietly whilst the more gregarious characters oohed and ahhed at theirs, grabbing all the attention, gladly removing it from me in the corner, trying to save the ribbons and bows, saving the gift tags, always noticing who had thrown their £10 in the rubbish pile, watching people opening the gifts I had wrapped up for them. For me it was never about what I had, more about the quiet time when i could hide away, the watching of other people and observing how others behaved when opening their gifts and compared them with others. Despite this, if I had got a blanket or a body sock when all the others had cash, chocolates and toys, I would have been singled out and felt it. 

I have no diagnosis of ASD, and have never pursued an assessment. I strongly suspect that the children's autism genetically stems from me though, and see so much of myself in my eldest daughter in particular (which is great for her as i completely understand how she thinks and feels about things most of the time).  That is another post for another time though. The relevance here is that I never really played with toys either. I loved cuddly toys- I had cupboards full and remember being literally devastated when my plush rocking horse was thrown in the tip when I was 17 years old. I did move on to collecting cat items- ornaments etc for a while, but even now I have a few cuddly toys that are mine. I always knew what I would like for Christmas as a child- invariably a cuddly toy, and I remember the conversations that ensued each year when my list for Father Christmas was asking for more cuddly toys, trying to persuade me that I did not need any more cuddlies, that I would need to thrown out some before I could get any more, that Father Christmas made toys, not cuddlies etc. It never worked with me. I still always wanted the same things. My daughter is exactly the same. 

My son didn't ask Santa for anything particular this year. He doesn't know what he wants other than - ready for this??- a laptop, an ipad and lots of Robucks. 

My youngest daughter asked Santa for a list of toys that she has been compiling and checking repeatedly since the summer. Many of the items on there I have never seen anywhere, but have had to do some searching about. 

There are specific items that they all need, including weighted blankets, a writing desk ramp, a specialist trike taxi so they can all ride bikes together, the constant replenishing of their clothes and shoes ( the same ones of course) , replacement dummies and chewy sensory items, but I will not be giving them these as their Christmas gift. They will be having items from their letters to Santa for Christmas. Of course they will be getting some additional items too to fill their stocking a little more, and a special gift each from us as parents too, but none of these will have been marketed as being for children with ASD. 

I have little doubt that parents of children with any additional need or medical diagnosis will have found this same phenomenon expanding over recent years- the bombardment of targeted marketing from online stores, aiming products at your child's specific needs. Imagine if Toys R Us or Smyths (or others) advertised their toys as being specifically for children without ASD? 

For us, the plan is to proceed with caution, monitoring their reactions, feelings and anxieties every turn, whilst continuing to educate them in life through experiences, being sensitive to their needs and preferences wherever possible, guiding them through every step, supporting them with their sensory needs, carrying a backpack full of aids and distractions, but overall treating them the same as any other child the same age, to the best of our abilities.....regardless of what others may say from the outside.

Changes beyond our control

We all know that change can be a problem for our people with PDA and autism. When anything changes, that they did not know about, plan, and indeed change themselves, it means something happened that they did not have control over and this raises their anxiety. We have found that even when we have involved our children in every step of a planned change, and given them control of it, hey still struggle to cope with their raised anxiety levels once the change has been carried out. Conversely, we have also worried ourselves over making changes, such as moving furniture around or buying a new fridge, taken our time, sussed out their opinions and then, when we have finally made the change, they have barely noticed.

Not only have we had one unwell child here this past week, who has had to become our priority when making decisions around activities and outings, but also we have had a more positive and exciting change here- snow!

We used to live a lot further south than we do now, closer to the sea, so we rarely had snow, and when we did it would be gone as fast as it arrived. I have memories of when my two eldest were younger and it snowed one day. School was closed for the day due to the playground not being 100% safe, so we grabbed our trays and headed for the park. Within half an hour we had one broken tray, one little child in tears wanting to go home - not linked to the broken tray- and one desperate to stay playing in the melting, muddy snow.

In contrast to this, we have had three days of snow here- enough to build a snowman each time- in the past two weeks. Before this, the last snow we had saw our eldest daughter outside, playing in the snow at 4am! Needless to say we had to bring her inside and warm her up again, try to settle her back to sleep, ready to play outside in the later morning. She hasn't done that this time thankfully, but I have woken each morning just in case and have been listening out, just to be sure.

In our freezer right now, we have a plastic container with a piece of snow from yesterday's snowfall safely inside. This may seem like any old piece of snow to the uneducated, but to her- and us- it is her snow dog's ear. We also have a pair of socks and a stick that were his ears and tail (tail yesterday, then re-purposed on today's snow dog as ears). We had similar items in our freezer for months after the last snowfall- she bonds to things very easily, and they become like friends to her, so the process of them leaving her is like losing a friend would be to others. (and no, she does not have attachment disorder, was not neglected as a baby).

We also have two laminated sheets of photos of them all playing in the snow we have had this past two weeks so they can remind themselves of the fun they have had, and see the snowdogs too. I hope it helps her.

Our youngest, who has been unwell this week, is not as keen on snow as her big sister. She doesn't feel the cold as much as the rest of us- often wants ice, slush puppies etc when we are cold and outside, takes her clothes off when we are all wrapped up due to her sensory processing difficulties- but snow seems to be different to her. I have not worked out whether it is the feel of it, the way it makes everything look different, the sound of walking on it, the fact that it doesn't feel as it looks, or just that it is so cold that she doesn't like, but she will come out in the snow for the shortest of time, then return inside to sit by the window and watch the snow fall and us play. I can't help but feel a little sad for her about this, but as a child I dreamed of being snowed in and having to tunnel out (I still do if I am totally honest) so perhaps snow means something different to me than to her.
Our eldest daughter loves snow more than I can express. She gets equally excited about snow as her birthday or Christmas- hence being out in the garden at 4am that morning. As soon as she hears mention of snow she beams with glee. I wish the weather forecasters and media wouldn't forecast or advertise incoming snowfall unless they are 100% sure of it though as she has been disappointed this way many times. We are hopeful that this will ease with age for her, and that she will be able to understand better that snow cannot last forever here, will be fin whilst it lasts and then melt. As it is though, she loves to play in the snow- repeatedly wanting snowball fights and to build a snowman or a snowdog- but struggles hugely with the loss of the snow and her creations with it. She loves the way it makes everything appear, loves the cold feel of the snow in her hands and hair, enjoys wrapping up warm to venture outside, and thoroughly enjoys a gentle and controlled snowball fight with us.
Our eldest is still struggling with his low mood and poor sleep, so the snow hasn't had the same effect this time around that it normally would, but he has still managed to get outside into the garden to play a little. He has always loved the snow- he is very physical and competitive, so the idea of being able to throw snowballs suits him to a tee. Surprisingly though, today he has been too scared to get in the sleigh (I pulled my eldest daughter to the shops in it earlier today with her screaming a mixture of enjoyment and terror all the way there). Despite him detesting the feel of wearing a coat or jumper, he happily dons them, and more, in order to play in the snow- play for him consists of shoveling snow into the wheelbarrow repeatedly, throwing snowballs (redirected to throwing them at the house walls) and trying to entice others into a snowball fight (which usually ends in tears). I was so pleased to see him outside this past couple of days though. It is so difficult to coax him out of the house lately that we have resorted to gradual exposure to leaving the house in order to try and reduce his anxiety over a period of time. Christmas markets/shopping are out of the question for him, but he will still go to a couple of specific things, so we try and cram everything we need to do around those. We have plans to go to a fair in the next few weeks so are building him up to that gradually (bright lights, movement, loud music, lots of people, possibly rain/snow, no car park near by.....but once they are there and fully prepared they all love it).

I was so desperate to get out of the house today that I offered my two eldest children cash to spend in the shop if they came with me- plus a sleigh ride on the way. My eldest daughter would have come with me anyway, regardless of sleigh or money, but I really wanted both of them to come with me, to get some fresh air out of our garden, to see the snow away from our street, and get some exercise. After a lot of bargaining we all went together. It cost me £4.70 and a compacted ice ball thrown at my head, but we got out. The unexpected bonus on the walk home through the park, was that my daughter started playing alongside another girl too (until she slipped on the ice). My son got sent home after throwing the ice ball at me- it hurt, and unfortunately for him he is a good shot, but I knew that from there nothing good was going to happen. Overall I still count it as a good outing though, as far as things go here.

When snow comes, changes everything, causes such excitement and then leaves it can be hard to process, explain and accept. It can cause a barrage of emotions and anxiety in a short space of time. It is extremely good fun and you get to play games that are only appropriate in the snow, you gladly spend time outside with water falling from the sky (in general, for limited time...) and you appreciate your central heating like never before. Similar issues come with birthdays, Christmas, illnesses and more. We cannot control any of these, neither can our children, but we can help them understand that changes like these aren't all negative or permanent, but have positive sides too.

We will not ever stop our children from having to face changes, never shelter them from life, and always encourage them to talk/write/draw/act about their worries and anxieties so we can help them through them, making each time easier for them. I hope this will help them grow into adults who can manage their anxiety and struggles enough to live as independently as possible.



Obviously what works for us might not work for you, and vice versa.

What is PDA anyway?

I know that the initials PDA can mean a lot of different things- don't search it on google images for that very reason. In autism and our world, it stands for pathological demand avoidance.

There is a lot of professionally written information about PDA available on the PDA society website https://www.pdasociety.org.uk/ with a section about what PDA is here https://www.pdasociety.org.uk/what-is-PDA/about-pda

I started there when we first began suspecting PDA in our son. I took a long time reading through their information, comparing it with other available information (national autistic society http://www.autism.org.uk/about/what-is/pda.aspx, Me myself and PDA https://memyselfandpda.com/what-is-pda/ to name a couple of sources). These were useful, and made me realise that all of these symptoms actually amounted to something other than a paranoid parent, or the need for more enforced parenting courses.
This said, the most useful information I found anywhere was that from other parents and people with PDA themselves.

There are many social media groups and YouTube channels where people talk about PDA (I don't feel comfortable sharing the groups here as they have strict membership criteria to maintain the security of their members, and the YouTube channels also vary).

So, from my experiences, PDA is the constant, over-riding need to avoid doing anything you have to or need to do, especially if someone else has asked/needs/wants you to do it, regardless of what it is or why, along with the inability to verbalise your thoughts adequately to be understood, leading to high levels of anxiety and frustration. PDA is the anxiety led need to be in control. If a person with PDA is not in control then their anxiety level rises, which can manifest itself in a variety of avoidance strategies and escalations.
PDA and autism are co-morbid (exist commonly) with other conditions as well, such as ADHD, sensory processing difficulties, depression, and many more. Just because you or your child may have a diagnosis of PDA, do not assume that means that PDA accounts for everything.

There are many useful books available on autism and PDA, one I would thoroughly recomment you work through with your child is the ASD workbook.  This explains about autism and the different profiles, as well as having exercises to do together to help your child realise it is not all doom and gloom. I would recommend you read ahead and prepare for questions that come up in order to help your child.

Useful reading

I am a member of several relevant social media groups and often see posts asking for recommended reading, or for sources of information. It is not too long ago that the possibility of our children having autism crossed our minds again, particularly with the different profiles within the autism spectrum, and that prompted me to search out further reading, which I thought I might share with you here:

YOUR Autism MAGAZINE
I signed up to The National Autistic Society after my eldest was diagnosed, particularly because we needed something physical he could have with him that was official and let people know some of his difficulties without him having to explain anything. The membership came with an autism card which he can carry with him if he needs to. I digress.....The magazine is quarterly and delivered to your door as a part of your membership (we paid £8 a year I believe). I honestly don't find magazines generally relevant, but this magazine covers a wide range of issues and offers advice within its' covers. There are also advertisements from specialist providers, which is something I have also found extremely useful as generally I find that adding 'autism' to a listing instantly adds £s.
This particular issue is the Winter 2017 issue and features Anne Gegerty from the TV programme The Chase, talking openly about having Asperger's syndrome and how it has affected her, whilst showing a strong, positive outcome as well. There is also an article by a mum on how she managed her feelings after her son's diagnosis- another common thread on social media, which I fully understand and am still working through with my eldest daughter's diagnosis as I await the full report.

Aspergirls by Rudy Simone

I bought this book before taking my eldest daughter to the GP with my concerns, and before I had even considered she may also have autism. So much of the Asperger's syndrome profile seemed to fit her that I wanted to read more about it and see if I could help her in any way. This book has a lot of information about different life stages and experiences, with examples of how they can be handled by the person with Asperger syndrome and parents too. The golden page of the book for me came at the very end, the Appendix. This is a table of all the traits of Asperger syndrome and I was able to read through it, putting specific challenges and incidents for my daughter by each trait listed. It was a real eye opener but didn't leave me hanging with nowhere to turn, because the book itself addressed the vast majority of these too. I would thoroughly recommend this to anyone who has/suspects they may have Asperger syndrome, and to those who have a loved on with Asperger syndrome. The book is Aspergirls because the profile of Asperger syndrome in girls is so different to that in boys that girls often go undiagnosed. Women are generally more social in nature, so develop 'masking' techniques at a younger age, becoming to skilled in this and social mimicry that they can appear neurotypical at an assessment or appointment unless the people there know exactly what to look for. I found it extremely useful to print a copy of this appendix from the website http://aspergirlsociety.org/female-as-traits/ and jot examples by the traits listed, then included this with my forms to CAMHS (child and adolescent mental health services) when raising my concerns and requesting an autism spectrum disorder assessment.
I should also mention that currently, Asperger syndrome does not feature in the diagnostic manuals used in the USA and referred to in the UK, so a diagnosis of high functioning autism is given instead. For any research/seeking support, high functioning autism and Asperger syndrome are synonymous. I would recommend purchasing this book, rather than borrowing it if you anything like me as I needed to jot down notes as I went through it, highlight sections that rung so true they could have been written about my child, and have returned to it since reading it the first time.

Can't Eat, Won't Eat by Brenda Legge

My youngest was always happy to try most things, but once she tried something and decided- for whatever reason- that she did not like it, that was it. Never again.
Early on, as a baby, she was difficult to give a bottle to, a 'sicky baby' and so we weaned her as early as was safe to do so. Even then she would have a little plastic spoon for her, and one for us, with the one for us barely ending up in her mouth, hers invariably on the floor several times over and her using her hands to eat. Not a problem.
Not long after we moved she began to become noticeably fussier, to the point that she ended up only eating cheap tinned spaghetti hoops, cheese and tomato pizza- only a particular brand and size, a certain sugary cereal and pop to drink. She could be persuaded to eat a Mc Donalds happy meal, on days we could get her out of the house, but eating became a real problem for her, and caused me great concerns. I was as sure as I could be that there was nothing physical preventing her from eating, so we had a full sensory profile and allergy test carried out. The sensory profile picked up a whole lot of issues for her, and offered strategies for us too, which we are still implementing and will continue to do as long as she will let us. The allergy test came back with allergies that I had suspected from her symptoms of mouth ulcers, bloating, red itchy skin in patches and tiredness. Whilst waiting for the results of these tests, I bought and read this book, which offers a lot of common sense approaches to helping your child to eat- I say common sense approaches because a lot of them are what would be considered normal approaches for any child, but in the panic of having a child who is not eating for whatever reason, as parents, I think we go into panic mode rather than common sense mode, so this book is useful for returning you to basics and working through possibilities to help your child. I particularly liked the case studies within the book, and found some of these directly relevant to our situation with our other children as well as with our youngest. It is also very reassuring to know that there are many other parents out there with the same daily struggles over food and eating going on, and that there are places to go for further advice. We use some of the strategies from this book alongside the altered allergy free diets we have here and have seen a marked improvement overall. She is still 'fussy' and some days feel like we have taken three steps backwards, but there is hope.
I would also recommend a sensory profile to any parent who has a child who is struggling to eat. We did not realise the implications that her sensory processing difficulties could have on every aspect of her life, including eating and food. In order to have a full profile carried out, you need to find an occupational therapist who has completed a post graduate qualification in sensory integration. I know this differs around the country (and within our own county depending on what your surname is it seems) so you may be able to access this through the NHS or you may need to pay privately. We had to pay privately for two of our children, and will be returning in the new year for a sensory profile of our third child, and they are worth every penny for the insight you get into your child's world and ways in which you can help them.

Pathological Demand Avoidance Syndrome. My Daughter Is Not Naughty by Jane Alison Sherwin

(image from amazon.co.uk)
This was one of many books first recommended to me when I began to realise the PDA profile fitted my son. The title itself was exactly what I had been telling people for years (obviously about my son, not daughter at the time) but reading this book made me realise just how much of my youngest daughter's behaviours were just like my son's had been, but more intense at the same age.
Mollie- the author's daughter and the focus of the book- had so many behaviours and struggles that were the same as my son's had been and continue to be, that it was very hard to read. I was in tears of relief more than once to read that he was not the only one, that there was a reason for it all, and that I had been right all along in trying to tell these professionals for seven years that I did not need another parenting course as they did not work. Until I read the book, all I had read were the clinical guidelines and traits of PDA, which were confusing me as so many crossed over with other conditions, but reading this book, and rereading sections of it, reassured me I was going down the right road. I find it much easier to understand the black and white traits and symptoms when real life examples are put to each of them as I find they can bee ambiguous otherwise.
Do not be put off by this book being about a girl, regardless of whether you have a boy or girl who has/may have PDA, this book is for you and is well worth purchasing so you can return to sections of it later.

Asperger's Syndrome for DUMMIES

I have to be totally honest and say that I have not read all of this book yet. I bought it after finding many of this series of books were very reader friendly and useful in the past, but felt a little disappointed upon first opening this particular title. I think the main reason was because I wanted to better understand my daughter, and found a heavy emphasis on men and boys here, with a chapter on how it is different to women and girls. I would have found it better, and more useful, to have examples and advice imbedded for both sexes throughout the book rather than separating it out in such a way. That said, I will be reading it over time and thought it still worth a mention for those of you who may appreciate a broad introduction to Asperger's Syndrome, with separate chapters for aspects of life with Asperger's Syndrome, simply marked advice and easy to locate sections. Another aspect that I didn't consider when buying this title was the title of it, which my daughter with Asperger's found offensive until it was explained to her that it was not calling her a dummy. It has been endorsed by The National Autistic Society and does contain a lot of information for the reader, with a section for those living with someone with Asperger's syndrome too.


Don't Worry Be Happy

This is one of those twee gift books that you get someone when you aren't sure what to buy them, or find in the charity shops, except I bought this one full price from a store, brand new, specifically for my eldest daughter. She has such low self esteem and lacks confidence in herself, as well as having a lot of worries and anxieties, yet she spotted this little book on the busy shelves of the bookshop and took an instant liking to it. As she is only young, a lot of the quotes are over her head now, but the book will last her years, long into a time when she can fully appreciate every single page inside. It is a perfect size to fit in your bag or coat pocket for when you need a little boost, or a smile, and I have found it excellent for her at raising a smile and helping her see she is not alone, in a simple way. One example of a quote inside is 'Just take the first step'- not too profound, but when you are literal and struggling to cope because of your anxiety and sensory processing difficulties, such a simple sentence is unbelievably powerful. I like to take quotes from this and send them to her on Facebook messenger now and then, particularly when she is having a tough day, or a recharging day. I would not easily recommend it for men or boys, unless they are happy with pink- as I know many are, but my son would rather eat his own arm than have anything pink near him- the colour scheme is heavily pink/purple and yellow. A perfect gift to bolster anyone's confidence and self esteem without the counselling costs.

The Highly Sensitive Person by Elaine N. Aron
How to thrive when the world overwhelms you

(image from amazon.co.uk)
It had become obvious to me, from a very young age, that the world was a scary and unfair place, where promises are broken, people don't say what they mean, and they let you down. I discovered that it was extremely difficult to find someone trustworthy to speak to about these feelings and was diagnosed with a range of disorders as a result of trying. As soon as it became apparent to me that my children were finding the same difficulties in life, I found this book in a free book shop. It is not particularly about any diagnosis, but focuses more on the actual problems that are faced daily when you see the world differently to the majority of society. I read it as a parent, seeking a deeper insight into my children's world and ways I could help them deal with everyday life, but was shocked to realise how much of this applies to me too. It made sense of a lot of my own childhood and adult difficulties, something I think parents of children on the autism spectrum need to be aware of. I am under no illusions about there being a possible genetic link in autism- I strongly believe that I have autism with the Asperger or high functioning profile, the same as my eldest daughter, but have been diagnosed with so many other things along my life where doctors have missed my real struggles that I see little point now in pursuing any formal diagnosis for myself, rather focusing on my own children getting the support they need and can access now, support that I needed growing up but could never access. But I digress again...this book goes through stages of life and addresses possible issues faced by sensitive people at these times in their lives. It ends with advice for employers and teachers, sections which are invaluable when you are fighting for support for your child and not being heard.
Sadly I am not sure if this book is still widely available new, you can purchase it second hand though.

Simplicity Parenting by Kim Joan Payne MEd with Lisa M Ross
Using the extraordinary power of less to raise calmer, happier, and more secure kids

If you want to be able to help your children live as adults, in the world without any distractions from technology or trends then this book is fantastic for you. It reads similarly to an academic paper in places, but bear with it if you aim for this lifestyle.
Some people on the autism spectrum find screen time over stimulating and need nature and calming, relaxing time to recharge and access down time for their bodies and brains. These people will benefit from this book and the ideas within. It guides you towards a decluttered life and home, practicing mindfullness and being content in your life, whilst maintaining boundaries between adults and children.
I read this book from cover to cover, and it was hard going at times, requiring your full attention to fully wade through the different academic opinions, and I tried some of the suggestions from the book with our family, but soon realised that our children fall into the first category. They all respond to screen time in the opposite to the well published and preached research- they find it relaxing and it helps them to unwind, recharge and sleep. Any attempts at yoga/mindfullness/massage are met with over stimulated children who escalate very quickly here. I cannot declutter and remove any items we do not use, because they ask for them a year later and cannot understand where they have gone, why they would have gone, and why I would have changed things like that.
I fully agree with some aspects of this book, even for our family, and would love to be able to live a less cluttered life with my children being happy, but it simply would not work for us.
Also, I take issue with some of the topics and opinions about children being so different to adults, but we almost completely unschool our children, which I am aware flies in the face of most research and literature, so accept that. If your children- and you- love routine and schedules, with scheduled breaks and the minimalist lifestyle then this book is for you.

The Explosive Child by Ross Greene

(image from amazon.co.uk)
This book has completely changed the way I deal with my children's concerns, worries, demand avoidance and meltdowns. It will not be for everyone, but has worked for our house.
There are three styles of parent interactions with children discussed in detail, and examples of what not to do for each. The idea is that you read through, then try the style of parenting and see what effects and results you have in your home. For some it will already be the norm whilst for others it will be a total breath of fresh air, and for others you will find it useful as a coaster- as with any book.
Personally though, I found this book to be extremely enlightening and it addressed far more of our everyday underlying battles than any parenting course or professional ever has. It has been a few months since I really started using the strategies from this book and there has been a definite reduction in the daily challenges here, and more open conversation from the children too- something I thought I would never say. They have always known they can talk to me about anything, but I underestimated the importance of repeating their concerns to them and being able to encourage them to expand on their worries and anxieties without making it a demand. It is easy to follow and the examples are laid out in such a way that you can return to them easily to refresh your memory of the specific wording suggested (which sounds a bit odd at first but soon becomes second nature). It has allowed me into my son's world recently, which has been so important given the bullying and discrimination he has been facing.

I also have a few other books which I am not going to discuss in such detail, for various reasons:
Free to Learn by Peter Gray is one I bought when I assumed the professional sermons about screen time were blanket correct. But now I know better for sure. It does support unschooling principles and discusses reasons why this can be the better way forward in some situations, but I found it too academically written, and not relevant enough to special needs and the challenges we face here on a daily basis. If you are interested in unschooling and believe your children's thoughts and beliefs are as important as your own then it may be worth a look for you, as it does support this, as do we, but it is heavy going in my opinion and there are plenty of other books on unschooling.

60 Social Situations & Discussion Starters by Lisa A Timms 
to help teens on the autism spectrum seal with friendships, feelings, conflict and more

I bought this recently, and have not had the time to fully read it yet, but have looked through the first couple of chapters. It is an interactive book, full of questions, much like a counselling session where you have to look at your own expectations and understanding of situations, but also offers advice and parent homework which I find particularly positive. My children are all slightly too young to begin working through this with them, but I aim to work through it alone first, then with them starting mid next year. I wish someone had taken the time to talk about these topics with me growing up.

No Worries by Dr Sharie Coombes

A book for children to work through alone, or with parents, to put their worries and thoughts don on paper. I bought it to work through with my son but, at age 11, he turned his nose up at it saying it is too babyish, and I can see his point so left it there. I have taken some of the ideas and activities from in this book and done them secretly with both my older children with positive outcomes for both, and would recommend this for those who are a little younger, perhaps 7-9 year olds.

Can I tell you about......

The books I would put top of my list for any parents and junior age children would be the Can I tell you about.... series. We have a few of these for different diagnoses and each of them is as useful as the next. They each give a basic and brief introduction to their diagnosis and explain, in simple terms what it means. They are printed so the left hand page is for children, with an illustration and less words, whilst the right hand page is aimed more at older children/adults with more details and examples. There are lists at the back of them for further support and they are suitable to give to a more reluctant or demand avoidant tween to read in their own time, with the assurance that any questions can be asked openly (I cannot believe I just had to add the word 'avoidant' to the dictionary on here!). These books are also excellent to give to friends/family/teachers who lack understanding and need a quick overview.The titles we have here are:
Can I tell you about Selective Mutism? by Maggie Johnson and Alison Wintgens
Can I tell you about Asperger Syndrome? by Jude Welton
Can I tell you about Pathological Demand Avoidance Syndrome? by Ruth Fidler 
Can I tell you about Sensory Processing Difficulties? by Sue Allen

My only niggle is that they have either a male or female on the cover, and there is no option to change it. This was an instant barrier to my 11 year old son with PDA, but once I explained I shared his annoyance at that he was more willing to read it.

I hope you have found this useful, and please feel free to share any other books you would recommend to others who are just beginning their battles with the authorities and professionals, or who are newly diagnosed, facing questions from family and friends, or who are looking for a relevant book or magazine to read.

Making it to appointments - fail

This afternoon has been a fail by normal standards. As I tend to type as I speak, I thought it might be useful to record an audio video about this experience too....hopefully it is useful and not too rambling 

https://youtu.be/FQzggaOJqYA 


No doubt we are being judged and eyes being rolled right now by mental health professionals as a direct results of this (which is fine and washes over me now).

Things always happen in groups - not always threes.
Yesterday our van broke down (again). Luckily not in a dangerous place this time, so we did not need to be rescued by the police (an ordeal I never want to repeat). We (by which I mean my husband and pure luck) got the van home and on our driveway, but the clutch is not working and the van will not go into gear.
Despite today being my chance for a lie in (meaning not having to wake the children up early to get out today- not an actual lie in by any definition), I got up early and prepared a treat breakfast of waffles and extras for us all, in anticipation of the van making a trip to the garage - again.


Today is my son's last counselling appointment. It has been rearranged a few times already, so today was the last attempt by us to make it. This is our only appointment today, 1pm.

Guess what time the RAC turned up to tow the van to the garage, with my husband?

You guessed it, 12.30pm. At 1pm the RAC man was still trying to attach the van legally to his van in order to tow it safely the ten minutes down the road to the garage.

My son knew about the appointment and really didn't want to go- an ongoing theme throughout the series of appointments requiring a child with autism and pathological demand avoidance to sit and talk 1:1 with a counsellor in a strange place where the room changes often, but the knowledge that it is the last one helped convince him to get dressed and ready to go.
Our eldest daughter was dressed and willing to go- just about.
Our youngest daughter totally, absolutely, and passionately refused to make any required effort towards going out. Refusing to get dressed, refusing to talk/listen, bribery not working either. At the point when your child is screaming, wailing and crying, all because their anxiety led need to be in control is so high, that is the point where I put their needs first every time (often way before that but this was an appointment we had to get to). The only other way forward from this point was for her to have a full meltdown which would have been much worse for all concerned.

Frantic internet searching with one hand (I am becoming quite adept at this), whilst consoling a young child in panic attack state with the other, found me the phone number for the place where this appointment was to be held.
I managed to coax her to being quiet enough for me to phone that number- still with her curled up in a ball on my lap- only to hear it has been changed to another number- cue panic as I have no spare hand to write down a number (obviously) and a chaotic room now with three anxious and confused children who I am trying to get to help me remember this new number as I repeat it out loud.

A judgemental tone on the other end of the phone told me all I needed to know about the receptionist who answered this new number. As soon as I explained that the reason I can't get my son to the appointment at such short notice is because I literally cannot get my other child out of the house, the dreaded 'I see' in THAT tone was the response I had- which invariably means the polar opposite, that they have absolutely no idea what it is like trying to get three children with autism and pathological demand avoidance out of the house, at the same time, to go to something they do not want to go to, by myself.

**Just a quick note here to say that even though today was an activity/appointment they really did not want to go to, the response is the same when it is somewhere they do want to go- tomorrow we have gymnastics and I know we will have the same trials getting out of the house then too, as we do every time we need to go anywhere**

As soon as I told the two eldest to take off their coats and shoes, continue doing what they were doing before this whole attempt at going out was made, and to put the pushchair back in the shed please, the demand for leaving the house and getting dressed was gone, and the panic attack began to subside in my youngest. My eldest visibly relaxed in the knowledge that he did not have to go now either. This meant I was able to phone the office where the counsellor is based- knowing she wasn't there now- but to leave a message stating exactly why I was having to cancel this appointment, and leaving three options for them getting final session paperwork to us for completion (I honestly wonder sometimes if that is their primary focus, as she keeps telling me about their annual funding being reliant on value added sessions which are proven by the paperwork they have to laboriously complete in these sessions- a demand!)

I am hoping they will phone me to discuss today and arrange foe the paperwork to be completed without me having to arrange a further session, but we will have to wait and see. It is now half way into the planned session time and I have received no phone call as yet.

(we are still waiting for our social worker to phone us to arrange a child in need meeting - waiting 2 weeks now already, waiting for the education people to phone us back - waiting 6 months.....I have given up chasing people as long as the status quo is stable for us all)

I know have my eldest playing online with his friend, learning how to stream on YouTube, how to communicate effectively without being overbearing, and work ethics; my eldest daughter relaxing and recharging after a busy day yesterday, watching videos on her iPad; and my youngest daughter, still in her pyjamas, still unable to get dressed, flitting from one activity to another, obviously unsettled and still calming down whilst my husband is at the garage and I am trying to write this post whilst setting up a video recording session too (of course, as soon as I sat here, by the computer it was imperative that my youngest used the computer too, at the same time, and the both girls are sat here, by me as I type).

Lightening the mood- literal thinking

Living in a home with three children with autism means we have to think very carefully before we say ANYTHING. All three of my children take things literally, with my eldest daughter being the most literal. As much as this can be awkward at times, particularly when members of the general public carelessly say things that then scare them, it also has it's more humerus side, that they can also laugh about once it has been shared and explained- at length- afterwards (mostly). A few of the most common examples we have that get taken literally:

'Jump into bed'
'I've got a frog in my throat'
'I have pins and needles in my foot'
'My feet have gone dead'
'It's raining cats and dogs'
'I'll be there in a second'
'That's cool'
'being thrown in the deep end'
'get a wriggle on'
'drink up'
'watch the step'
'watch that car'
'you look cold, could you go and get your jumper?'- usually answered by a yes or no rather than going to get their jumper
'take your coat with you'- literally takes it with them, not wearing it
'put your hat on'- on anything nearby
'dinner's ready'- they don't come to eat it until you tell them, one by one that their own dinner is ready and that they need to come and eat it

Everytime I say I'm freezing I get corrected swiftly, and the facts of actually being frozen told to me.

In an art class where wire was being used, the teacher got her wire cutters out and jokingly said 'right- has anyone got any wobbly teeth I can pull out then?' My daughter was visibly terrified and hid every time the teacher went near her, getting increasingly upset until we left early.

We're all getting ready, to try and get out of the house so I might absentmindedly say 'get yourself ready to go' which results in nothing being done (too ambiguous). 'Get your shoes ready to go' results in their shoes being put on the mat by the front door, but no attempts to put them on. 'Jump in the van' you can guess what happens.

Just the other day I caught myself saying something- I cannot remember what for the life of me- but she instantly stopped eating her tea, saying she was full up. Once I explained what I had meant, she polished off her tea.  It is tiring, constant and forces us to be direct in our speech, leaving no room for misunderstanding.
'Can you have a bath tonight?'- well obviously they could, but they won't unless I tell them to, specifically.

I am forever listening to what people say to and around them, trying to prevent them taking anything literally that will scare or upset them, often praying people think carefully before opening their mouths, which of course they don't. Sometimes I say directly to people' please don't say that, you will scare them' or 'please don't say things like that, they will take you literally'.

As they all struggle so much with their emotions, communication, understanding and sensory input, a large part of our home education with them is to expose them to as much of everyday life as we can, through as safe and managed a way as we can to start, increasing their exposure as their levels of security, understanding and confidence grow. This includes helping them understand common idioms, sarcasm and jokes, three parts of communication they all struggle massively with, but which neurotypical people don't even think about. We cannot ever teach them all the permutations of language, but aim to help them manage their daily lives better and with more stability in their understanding of other people (as well as appropriate use of their own made-up 'jokes').

I love the programme The Big Bang, and the way Sheldon has been taught by his mother what the social conventions are in certain situations. His use of these is not always appropriate, but you can see why he believes them to be. I find the programme to be an accurate depiction of life with autism (even though the programme makers have never confirmed the character to have any specific diagnosis), and perhaps a fictional glimpse into the future. We are not trying to bring our children up to be like Sheldon Cooper- please understand that, but certain aspects of his coping mechanisms, such as those mentioned here, we see as positive coping strategies for our children and aim to expand this to the use of language.

I just need to keep watching what I say in the mean time

Hints and tips along the way

Meeting other parents is where I think we pick up the most useful tips and hints- things we all wish we had magically known from our children's birth, but no-one tells you until now.
I am still new to this world of autism and SEN, paperwork etc etc so am sure I will be missing many many things below too, but here are the most important ones I have learnt about to date:

For example:

I didn't know DLA (disability living allowance) existed. I never knew that you can claim this benefit for children who have any disability, extra care of support needs beyond 'those normally expected for a child the same age'. My son is 11 years old now and when I think back to the financial difficulties I have had over the years because he has been unable to use public transport/eat cheaper foods/access mainstream activities etc I can't help but feel annoyed that I didn't know about it.

Plus- if you are caring for your child (or anyone else for that matter) who claims DLA (or PIP as older teenagers/adults) then you can claim carer's allowance as their full time carer. It won't make you rich, but given the hours you spend caring for your child (I will talk about children even though my husband is registered disabled because this blog is mainly about my children and our lives together with autism) the £62.70 a week is better than nothing.

You do NOT need a diagnosis in order to claim DLA. If you have any appointment letters, letters from other people who can confirm the difficulties that your child has and extra care or support needs they have then that will help your claim. DLA is needs based so make sure you put as much information on your claim form as you can (add additional pages if you need to) and base it all on your worst days. Keeping a diary for a few days before you begin filling in the form will help you immensely. Also, be prepared for completing the claim form to be soul distressingly hard as you fill out around seventy pages with the worst aspects of caring for your child and not mentioning any positives or strengths anywhere. Also, phone up and request a paper copy of the form because this gives you a date for backdating the claim and a date by which you have to return the form- far easier to motivate you this way I found. I found most of the questions seemed to lean towards physical disabilities, so look at the Cerebra guide for advice here http://w3.cerebra.org.uk/help-and-information/guides-for-parents/ Also- DLA is not means tested.

PHOTOCOPY EVERYTHING and keep everything in writing. If you are applying for something, asking for something or complaining about something, keep it in writing. Ask for email addresses, search the internet and social media for email addresses for people with responsibility. I have had to use my paper trail many times to push people to doing their jobs (should not have to, but you do).

CAMHS referrals - your GP (if they are anything like mine) will write as little as possible on their referral, and CAMHS will probably refuse the referral (if they are like CAMHS here), so refer yourself as well. Many councils have the referral forms available online if you search for CAMHS referral and your council area. If not, there is no reason you can't write them a letter detailing the reasons why you want them to see your child- focus on the triad of impairments for autism and either send it recorded delivery or hand deliver it.

Your local council has a local offer (in England). On the council website you can follow the menus/search for local offer, where they have to list all the available services for people with disabilities and additional needs in their local area. There will be useful contact information here for people in all different services, plus you might locate activities for your children if you are lucky.

If your child is in a mainstream school or home educated then you can apply for an EHC assessment (educational health care assessment). As a home educator I have not gone through with an EHC for any of my children purely because of the meddling family support worker we had, but I know of other local home educators who have EHC plans for their children, but the focus seems to be on trying to get those children into a school placement/alternative provision. If you have questions about the EHC process then your go to places are IPSEA (https://www.ipsea.org.uk/) or your local parent partnership (here called sendiass). The latter cannot advise you on what to do for the best and I didn't find them very helpful, but I know plenty of people who sing their praises, but those people know they definately want an EHC. If you are refused an EHC assessment then you can appeal it, and then if you are still refused you can take the local authority to court- called a tribunal- where you prove your child's needs and that a mainstream school and provision would not meet these needs, therefore that the authority needs to help. IPSEA has lots of advice on this and there are also many social media support groups which can offer speedier advice at times, with the usual caution for social media.

It is worth checking out what the local health professionals are commissioned to work on and diagnose. For example, here, CAMHS is commissioned to diagnose ASD but then there is very little follow up support; occupational therapy is not commissioned to assess for sensory needs or sensory profiling and speech and language therapists are only commissioned to work with children with physical difficulties with their speech. This meant that the wait for OT (3 months) and SALT (2 months) was a waste for all my children and they required private assessments.

There are websites that are full of advice, information and signposting for autism (http://www.autism.org.uk/) and PDA (https://www.pdasociety.org.uk/) which also include sections on assessments, diagnoses, symptoms, strategies and more. I recommend joining the autism society and reading their magazines when they arrive (quarterly I think) and using their card when you need to raise awareness that unwarranted advice is not appropriate.

PECS is a communication tool that uses small, simple pictures which you can put on a keyring to help your child communicate their needs. You don't need to pay crazy money for them either- there are many available on auction sites and online. Another similar topic is visual timetables- take a look on twinkl, or http://www.communication4all.co.uk/http/KS2%20Displays.htm amongst many others. They are also available readily on auction sites. We bought a whiteboard for our home and use magnets to stick their timetables up daily so they are easily interchangeable, removable during the day and the children all know where to look for the day.

If you suspect/know your child has autism, seek out an occupational therapist with sensory integration training. I cannot tell you how much of a difference this makes. We used http://www.childrenschoicetherapy.co.uk/ but you may be able to find people closer to you. I know sensory processing needs can seem small when you are in the midst of dealing with meltdowns, avoidance strategies, possibly violence and more, but if you can pinpoint any sensory needs with the help of a full sensory profile, then you can work with your child to reduce their behaviours and sensory meltdowns.

Grants- there are charities out there who offer grants specifically for children/families with disabilities and additional needs. We found that having DLA for three children put us over the income threshold for many of them, which made me question whether they realise why it is that we have DLA for three children and that that means we have three times the outgoings too, but if you search on turn2us, you will find a grants search tool where you can filter results to specific gender/age/needs. The main people we keep hearing about are Merlin's Magic Wand (they offer a day out for children and their families at one of their attractions if you are successful in your application) and Family Fund (we have not had any grant from these either but lots of other families have). There are many costs that families encounter when there are disabilities/additional needs- for example our swimming lessons are £18 a week for two children because they need the one particular teacher and no groups at a quiet time- and the only bike I have ever found that my daughter would consider going near would cost us £650. Items such as night pants at £4 a pack when they are on offer soon add up, dummies and chewy items aren't cheap, keeping the house warm 24/7 costs a small fortune- not to mention the assessments, parking for appointments, treatments, electricity to power their computers which allow them the essential down time to recharge after being around people, costs for the care farm....etc etc.

Young carers- if you have more than one child then young carers can be wonderful. Even though all my children have autism, our eldest daughter is able to cope with young carers because they have befriended her through 1:1 sessions with one particular worker there, so she feels able to access activities there now because she knows that worker. It gives her time to be herself, away from the stresses of living with two siblings with PDA.

Seek out local charities for activities for your children. We moved area last year from an area where there was very little as it was fairly rural, to an urban location. I was determined to find activities the children could access and where they would feel supported as quickly as possible in order to ease the transition of moving (autism, change, moving across the country, scary). Here we have a few charities who run various activities throughout the year for children of specific ages and needs as well as local groups I found through google and social media searches.

Autism stole my children away

Autism stole me children away
secret, subconscious hopes and dreams
eaten edge to edge along the years
anxiety, difficulties and strategies in their place
acronyms becoming part of our vocabulary
jargon once so terrifying now daily utterances.

My baby with her chubby face,
gripping her tiny hand around my finger,
gurgling, rocking, wide eyes unaware of the world
everything new, exciting, full of possibility
slowly but surely disappearing inside herself
daily demands have been too much to bear
her struggles all too raw and heartbreaking
my best for her cannot ever be enough
to guide her through our contradictory, non literal world
where different means wrong and understanding so lacking.

My tiny little girl, battled to survive
only to face the ongoing autism war
fighting convention, expectation, presumption and a rough start
people misunderstanding, letting her down, saying one, meaning two,
her young life scary, anxious, mistrusting, secret sorrow,
friendships elusive, world so loud and bright
room made for time out, recharging, rebuilding
meting people so exhausting.

My bouncing baby boy, rolls of blubber on chubby legs
up, walking before your body was big enough to cope
full of beans, mischief, the glint in your eyes
glazed over as life becomes too much
other people expect too much, traditions complicate life for you
what to say, how to stand, where to look, when to speak

For all of you, life is not straightforward
People are confusing, seem to be tricking you
Noises, lights, movements, smells, touches, foods, all too much
How will you cope as you age- how will you mature
my worries long ahead of your young years

within a year of the words being spoken, written in ink
coming to terms with what my heart knew deep down
trying to remain positive, look to the future with hope
strong for you when you can't be
guiding you through obstacles all the way

Autism stole my children away,
love and understanding keeps them close

Telling our children they have autism

At eleven, our son was pretty aware of why we drove the four hours to see a team of professionals, and so I explained to him beforehand that we were going to see them for an assessment, which meant he would have to do some games and online puzzles whilst I talked to some people in the other room. 

It was tough because I didn't really know what to expect either, so I couldn't answer many of his questions about the team, or day, but he understood that it was all for a positive reason and that, regardless of the outcome of the day's assessment, it didn't change anything and we still love him the same.

We had sat down together as a family a week or so before the appointment, and i had introduced the idea that there is a rainbow with fluffy white clouds that some people call autism. I explained to all three of my children that lots of people are somewhere on the rainbow or clouds (my son would not appreciate being on a rainbow, hence the fluffy clouds), and that makes them special, as their brains work in different ways to people who aren't on the rainbow and clouds. I introduced the words autism, demand avoidance and anxiety lightly and told them that me and their daddy thought that they were probably all on the rainbow and clouds, and that we both suspect we would be too, but when we were younger people didn't think of it like we do now.

They all accepted this introduction well, and it seemed to make sense to our eldest two, even though we had said we couldn't say they definitely had autism without a team of doctors assessing them first. 

The team we went to for our son's assessment, and our youngest daughter's assessment are a four hour drive away from home, so required an overnight hotel stay before the assessment. This provided me with the perfect opportunity, away from the normal distractions at home, to explain the next day and possible outcomes to them in age appropriate ways. 

Our eldest daughter was assessed by the ASD assessment team in our local CAMHS, so her assessment was spread over a few visits. She has far higher visible anxiety than my other two children and found the assessment process far more difficult than they did, possibly because of the environment being relatively clinical, the time between visits being prolonged and not knowing exactly what and who to expect. But then I suspect she would have reacted the same to the private assessment team also, and was concerned that she would not be able to be assessed by them in one day if she did have this reaction there. 

Our eldest said that the diagnosis made sense to him. I read Ruth Fidler's books to him about PDA and sensory processing disorder (available and more information here: https://www.amazon.co.uk/dp/B00QQWRY8C/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1). I shortened both and then left them for him to read himself when he wanted to. 

Initially he accepted the diagnosis and seemed to find it a relief that lots of his struggles were in the books I left for him to read. Then he went through a period of being annoyed that he had autism, wanting to be 'normal' and he said once that he wished he had nothing wrong with him. I have done work with him and used younger minds and online psychology sessions to try and boost his self esteem and understanding that having autism is not a negative. Unfortunately he has had some additional things to deal with since then which have had a profoundly negative effect on his mental health, but we are working on this together as best we can.

Our eldest daughter was amazing. She was happy- big, smiley happy- when i told her her diagnosis. She instantly said that she was relieved that she isn't just weird. She has said to me for some time that she feels she is different to other children and wants to make friends but can't. These were some of the main reasons we decided to go through ASD assessment for her, knowing how hard she would find the process. I felt it was important to be able to tell her that she is not weird, or different to others in any negative way, and to be able to support her in the right way, using the correct strategies. She is comfortable with the diagnosis and words around it, and we will be working together to help her understand herself better and her anxieties and feelings in time.

Our youngest is only five years old, and so I have told her she is on the rainbow and that means she has autism. I have also told her that some of the things she has problems with, like sharing toys, playing with other children, feeling angry and not being able to say it but only scream, needing ear defenders and other things, is because she has autism and PDA. I don;t think she understands it, other than knowing her big brother and sister also have autism. It is something we will work on together as she gets older, but until then we will try our best to help her, and he siblings to all manage and recognize their emotions and anxieties better.

As a mum, I have honestly found, an am still finding, their diagnoses hard to hear and take. 

I referred each of them for assessments because I strongly suspected that they had autism and PDA. In my heart I knew that each of them thought differently and had different strengths and already knew they had autism before each of their assessments. However, and I cannot stress this enough, knowing it yourself does not make it any easier to hear when it is categorically confirmed as a medical diagnosis. To sit there and hear a professional who has really taken the time to understand your child tell you about your own child is hard. So so hard. I am still awaiting two of their diagnostic reports, but the one I have for my son is around forty pages long in all and makes for tough reading. 

I found it nothing short of miraculous that, after only a few hours together, they had understood my son's struggles and difficulties, as well as his strengths. Hearing how many of the small aspects of his daily life they had picked up on, along with possible strategies and signposting towards help and support for him made me feel more confident in their diagnosis than any research beforehand had done.

They did exactly the same with my youngest daughter. The team had picked up on how bright she is from their testing, seen her strategies for ignoring and avoiding demands, seen how well she manipulates conversations and avoids topics she doesn't want to engage in. They answered how my son often walks in front of people without realising it, why he leans on everything, why my daughter can't sit and eat with us at meal times.....I could go on and on but basically, getting the diagnosis is hard and heartbreaking, but worth it for all concerned.   

Snow!

Yesterday my eldest daughter was having a 'very off day' as she put it. In her thought patterns she went to Christmas and how she has never had a white Christmas (sadly that it something I cannot fix for her), and she wished it would snow.
Then...

"MUMMY! DADDY! MUMMY! DADDY! IT's SNOWING!! REALLY SNOWING!! LOOK!!!!"

and just like that any thoughts of having a relaxing lie in this Saturday morning were gone. Gone into the box of hats, gloves and scarves, gone outside in the freezing cold snowy garden in my pyjamas because of course, snow means we have to have a snow ball fight and build a snowman.....right now.
(Last time we had snow my husband had to get her in from the garden at 4am! How she had known it was snowing at that time, or how he knew she was out there at that time I still have not worked out...but atleast I was glad this morning it was around 8am)

Little miss with PDA of course refused to come outside in the snow to play or join in, so her and my husband stayed cwtched in a lovely warm bed for a while, whilst me and eldest daughter threw snow balls, build (and rebuilt) a snowman together, then phoned them to get them out of bed and into the garden. Of course, little miss still refused, and remained defiant until we all went outside together and she had no demands to avoid any more. At that point she put trainers and gloves on with her pyjamas and headed outside, dummy in mouth, shouting for me to get her coat.

My husband let the rabbits out into the garden, so they thought it was great fun to try and eat the snowman's nose everytime we turned our backs, both girls had fun teaming up against daddy in the snowball fight whilst I headed in to make us all a warm breakfast/brunch and clear the decks for frozen gloves etc.

The snow has all gone now, puddles in it's place. Out snowman is a small blob of snow, with a soggy hat, two wet branches, a few stones and a very cold carrot surrounding him.

It made me think though, looking around at all the other empty gardens in the neighbourhood- living with children with autism has advantages and fun times too, and their rigidity of thought can make for entertaining times :)

People we have seen over the last 12 months... 'professionals'

'Professionals' is written such as a result of our encounters with many of them who I firmly believe are in the wrong job.
We have seen many who are excellent, well informed, care, experienced and who have helped us. Sadly they have not been the ones who have left the marks.


We have three children, and have moved area, both factors which have increased the numbers of appointments I suspect, but regardless of that, here is a list in as much order as I can remember:

GP- numerous times
Police
Health visitor
Occupational therapist with post graduate sensory integration training - private
Social services safeguarding team- at my request after physical injury and threats in our home from my son
Audiologist- NHS
Occupational therapist with post graduate sensory integration training- private- for different child
Online counselling for child
NSPCC- I approached them for support and do NOT recommend anyone does this. There are far better support networks out there who are less harmful.
CAMHS initial assessment- twice, for two different children
Family support worker- supposedly Early Help worker
Elective Home Education officer- informed of our existence in their locality by interfering family support worker
School nurses
ASD assessment team- privately funded
Social services safeguarding team- when I told the early help worker not to bother, she reported me to them!
Group counselling for child
Younger mind 1:1 counselling for child
Occupational therapist- NHS
CAMHS- concerns over mental health of child
CAMHS- initial assessment for third child
Social worker- did an assessment and met our children, then went off for six months
ASD assessment team at CAMHS - NHS
Younger mind wellbeing 1:1 sessions for different child
Speech and language therapists- NHS
Social Worker (at time of writing we have met our social worker once, briefly, and are waiting for a phonecall to arrange a meeting.....she has until Wednesday then I will be emailing her boss's boss)
ASD assessment team- privately funded

On top of these there is also Young Carers who are doing 1:1 work with one of my children, a care farm which my children access, hospital optician appointments and other medical appointments linked to other care and support needs.

Plus, local short break services open to all children with additional needs and disabilities because they cannot access mainstream extracurricular clubs and activities without support (I find the name 'short breaks' a cruel joke if I am honest but they are literally better than nothing), private swimming lessons (neither of our two with PDA can have group lessons and need the right teacher in order to get along at all), and carefully chosen other activities that will further their education and interests, whilst not causing too much anxiety or sensory overload. Plus, of course, the constant managing of our children's needs and anxieties, piles of paperwork that accompany every single request for support or help, fending off phonecalls and emails from people who always contact us at the worst time.

Our experience with the NSPCC and Family Support Worker was terrible. They met together, without us knowing, a few times, and discussed us, without us knowing, coming to incorrect conclusions and contacting people they had no right to contact, causing immense stress and putting our child in danger. A full complaint has been sent as a result and this is why my advice not to contact them stands.

If you have a child who is in danger from abuse then there are other charities and agencies who can help you, including Stop it Now! and Women's Aid. There is much anecdotal evidence from other families who have had similarly negative experiences unfortunately.

As with everything in life, some people will have had positive experiences where we have had negative and vice versa. I accept that and would not argue that that is not the case.

Assessment Journey

A story so familiar to so many families fighting the diagnosis fight, trying to prove themselves as good parents to professionals who insist on parenting courses, repeatedly finding yourself listing all the negatives about your child/family, repeating yourself to professional after professional, completing numerous forms and going to appointment after appointment, seeking referrals only to be turned down.

Our story started seven years ago when the first person, other than me, noticed that my son was requiring more input/care/support than a child would be expected to at the same age. That person was the SENCO at his primary school, who supported a referral to the GP and referral to the local paediatricians. One may be forgiven for believing that our story is short and ended there, but, as I am sure you can guess, that sadly was not the case. 

Our appointment with the paediatrcian was running late, so my son was unhappy in the waiting room. I read him the famous parenting riot act which subdued him just in time for the Dr to call us through for the appointment. 

We entered the new room, in a building we had never been to before, met the Dr, who we had never seen before, and whilst he checked our personal details were all accurate, my son sat on the chair as he had been told to. The Dr- a paediatrician remember- then said that he could not possibly have ADHD because if he did then he would not be able to sit in the chair still like that, checked his weight and height, and discharged us. 

We then had a number of life changing personal situations which took precedence for a number of years over any further investigations from unhelpful medical professionals. I completed several different parenting courses- each one prompted by my approaching someone for help for me and my son. These ranged from patronising to useless. Not one of them was helpful in any way, shape or form. One lady, who was delivering the course 1:1 with me after I refused to attend another course, actually gave up after meeting my son and I together, saying that she could see I was doing all the right things and the course would not be helpful! Sadly that was not the last parenting course I have been on though.

I am in no doubt that these parenting courses are extremely useful and enlightening for some parents, indeed they were for some parents who were on the courses with me. Those parents did not have children with the same needs as mine. Their children were and are in mainstream school with no additional support. Their children do not have medical needs or care needs beyond those expected for a child the same age.

I have stopped myself from hiding the eye-rolls when people suggest parenting courses, sticker charts, rewards, positive reinforcement, or sleep hygiene. I no longer nod politely and agree with these professionals who clearly have no idea what I, and my family, are dealing with every day and night. I have stopped waiting patiently for people to call me back and begun emailing heads of departments instead. There is no option if you want your children to be seen and taken seriously. Even then you still get fobbed off...but I digress.

It took from the age of four, to the age of eleven for my son to be finally assessed properly. That assessment only came about after we paid for a private assessment. Our reason for paying was not because we think private is better than NHS, or because we can afford it, it was because he had two huge meltdowns in a short space of time, both of which required police involvement, one caused serious physical injury to a member of our family, and social services would not help us. Our GP referred us to CAMHS (child and adolescent mental health services) who seem to do everything possible to not see anyone. They refused the referral three times until I wrote to them and followed that up with a phonecall basically demanding an appointment. The initial appointment was a few weeks later and they agreed that an ASD (autism spectrum disorder) assessment was needed, but the waiting list was around two years. Two years? He had just broken a bone in a family member's body and had a final warning from the police when I had marched him in there. No way could we wait two years. No matter how much I expressed my concerns for his mental health and future, there was no movement or support offered. To the contrary, me seeking support made things so much harder and opened the doors for busy bodies to stick their noses into our business, stir the pot, then leave us in a worse state than we had been before. That is why we went private.

We researched A LOT before deciding where to go for assessment. We didn't want to pay over the odds, wait a long time, see anyone who wasn't properly qualified or registered and inexperienced, and we had a fairly good inkling that he might have autism with PDA (pathological demand avoidance). We read a lot of books, blogs, websites and joined as many social media support groups as we could before deciding who to go and see. Our research led us to a particular psychologist with many years experience assessing and working with people with autism and PDA. Other people had been to see the team and some had come away without a diagnosis, some with, which led us to the conclusion that they were not just handing out diagnoses in return for money (a view many of these professionals seem to have but which can easily be discredited with a little research and diagnostic report). 

Our eldest daughter has been through more than anyone her age should have to, and has far more support and care needs than a child her age would 'normally' have.  Despite this, and the many professionals who have been involved with her, not once has she been assessed, or any real help been offered. Each and every person who has become involved with her over the years has done the bear minimum and then left. My referral to CAMHS was extremely thorough and we were fortunate to be accepted on to their waiting list around the same time as a new directive was published, stating all new CAMHS patients had to be seen within 18 weeks. She has been very lucky to have been referred, assessed and diagnosed all within a year. We now know exactly what she, and us, are dealing with and the best ways to support her. The assessment process was extremely stressful for her and caused her huge anxiety and stress, but her reaction to the diagnosis was amazing and inspiring.

Our youngest child presents spookily similarly to our eldest, but with even more pronounced needs and difficulties. We were as confident as we could be without having the correct degree, that she had autism and PDA. I approached our health visitor with my concerns and was spoken to as if I was three. She was patronising beyond belief, and no help whatsoever. My concerns over my daughter's sound sensitivity and sensory needs were brushed off, her demand avoidance surrounding sleep and eating were passed back to me with the suggestion of reward charts (yawn! eye roll!) and then she had the audacity to meet with our GP, without us knowing, and they discussed it together and decided there was no need to do anything for our daughter beyond (another) hearing test. I took her for the hearing test and told the lady there that we were wasting her time- which she then confirmed to have been the case as her results - again- showed no physical hearing problems. We decided to bypass the useless medical staff here and went straight for a parental referral to CAMHS and private assessment for autism and PDA with the same people we had decided to use for our son.

CAMHS actually saw her before the private appointment, and agreed that an ASD assessment was needed as she showed so many signs, but I told them I had a private assessment booked already and didn;t want to waste their time, or take someone else's spot on the waiting list, so ended it there for now. 

In our area, as in many areas in the UK, PDA is not recognised by CAMHS or social care. This is not because it doesn't exist, merely because the DSM-V (a diagnostic manual issued in america for professionals and insurance companies to know what will be paid for by insurance and what will not) has changed the wording for autism. PDA is not there and the manual no longer separates autism into different diagnoses, preferring to refer to it as an spectrum disorder. This is also why our eldest daughter has a diagnosis of high functioning autism, not Aspergers, as this was also taken out of the DSM-V and bundled into the umbrella of autism (I have heard parents of children with a diagnosis of Asperger's syndrome commenting that this must mean there is now no diagnosis for their  child and they must magically need no extra care or support now then). 

There is more information on this here: http://www.autism.org.uk/DSM-5

Our three children have been diagnosed with autis m, with different profiles, within the last six months.

Two privately, and one by our local CAMHS ASD assessment team.

They have been diagnosed with autism with a pathological demand avoidant profile (two of them) and high functioning autism with other needs too. 

I was going to list the people we have seen this year but will post that as a separate shorter post I think.

(side note- if, like me at first, you find these abbreviations and jargon confusing there is a brilliant site I found here: https://www.ipsea.org.uk/what-you-need-to-know/jargon-buster and another here: https://www.thinklocalactpersonal.org.uk/widgets/jargon-widget/)

Also- I read many blog posts and wonder how on earth these parents manage to find time to write blogs whilst their children are there with them, knowing how demanding this can be. Well, I have already had to save a draft of this twice, go and sort out a minecraft emergency, redirect three children several times to finding dummies, ipads, DVDs, TV remotes and given repeated clear instructions on how to complete everyday tasks that they would be able to do if I were not trying to do this.