Swimming

At my rheumatology appointment several months ago, he said the best things for me would be warm baths and swimming.

I cannot access my bathroom so the warm baths are out of the question for the time being, and I haven't got around to using the local swimming pool yet, even though I have phoned them up and discovered they have a wheelchair you can take into the water and a changing places changing room with bed too. The water there is warmer than the usual council pools and my children love it there with the river rapids and fun slide. It is just my own mind that has stopped me getting there to date.

This has been for a few reasons. Firstly my tremoring legs wobble as they shake, which I hate. It means people stare at me and I hate that too. I know the right ways to deal with it, but when it is in the moment and I am already feeling self conscious, it is not that easy. Secondly is the fact that one side of the pool, the side where I would be pushed into the water in the wheelchair, has a glass window wall with a busy café, play area and reception on the other side. Lastly, the change in me over the last year has been amazing, and not in a good way. The thought of bumping into people we know but haven't seen for some time and having that conversation where you know they feel awkward and don't know what to ask and what to not puts me off too.

7%

But last week we weren't local. We were four hours away from home in a relaxing and accessible caravan on a park full of friendly and helpful staff. With my children being home educated, it means we go away on holiday when aces are quiet. This means they can relax and enjoy things more and suffer less with anxiety and sensory overload. Generally there are far fewer children there, venues and activities are quieter and the swimming pools are emptier. The downsides are that often some of the activities get cancelled, especially daytime ones and there aren't so many opportunities for them to make friends. On this occasion t was a definite positive for the swimming pool.

The pool was a simple rectangular affair with shallow and deep ends, the latter being just 1.2metres deep. In the shallow end were a set of wide steps with a metal hand rail, then two pool ladders at either side of the deep end. On the first day I watched the children and my husband playing in the pool, having fun and was trying to decide if the effort and energy required to transfer out of and back into my wheelchair, combined with the effort of swimming would be worth it or not. Seeing them all having fun in there without me tugged at my heart strings, so when we headed back to the caravan I searched on YouTube for safe ways to transfer from the wheelchair to the pool and vice versa. I watched several videos before deciding on the approach I would take and planned to go the next day.

The next day we all put our bathers on under our clothes, grabbed all the towels we had with us and headed down to the pool complex. The lifeguards directed us in with the wheelchair, we easily found lockers and sent the children ahead into the pool with their flotation devices. I put my footplates into the locker to make it a little easier to transfer, took two towels with me and headed through the showers into the pool area.

I don't have great strength in my arms or legs, and have the added difficulty of tremoring limbs when pressure is put on them, so I knew getting into the pool would be difficult, and back out of the pool even more difficult.

We put the wheelchair at the shallow end of the pool, by the steps, next to the hand rail. Brakes on! My arm rests can be lifted up which was very useful here. I was able to hold the hand rail with my better arm whilst my husband held my left arm and I shuffled out of the front of the wheelchair, making sure my feet were placed on the first step. From there is was relatively easy to sit onto the top step and bum shuffle down into the pool whilst my husband wheeled the wheelchair to the edge, placed a towel on the seat and one over the back of the headrest for later on. The lifeguard came over to see if we needed help, but I told him we were OK until getting out of the pool.

Once I was deep enough in the water for it to help me float, I was able to swim off from the steps towards the deeper end of the pool. My children were so happy for me it was beautiful. They all came and gave me hugs in t turn, so many that I thought they might drown me.

I have always loved being in water and swimming, so have always been a relatively strong swimmer, able to get myself and my children out of any trouble in a pool or calm sea. This being my first time in water since becoming so unwell, I wasn't quite sure what to expect. As I started to swim it was quickly apparent that my arms were still able to move in a breast stroke motion, but my legs were too painful to do the same. My knees, hips and back were incredibly painful but I was able to propel myself using what motion I had in them combined with my arms. It didn't take long though before my arms felt fatigued. My son was amazing at that point and went to purchase me a pool noodle to reduce the strain on my arms. From that moment I was able to enjoy the experience more. I lay back and lay the back of my head on the noodle, lying back on the pool surface, bobbed around stretching my legs out under the water whilst laying my arms and head on the noodle and even managed to play catch with a pool ball. I did have to take regular breaks, pulling myself up on to the top step of the pool ladder, my son pushing my feet onto the rungs for me, and I was worn out around an hour before the rest of my family were ready to leave the pool, but it was worth every second.

When I was feeling exhausted I headed for the steps to sit down and rest in the warm water. Even though my wheelchair was at the side of the pool, I realised no one here knew it was mine. As I looked for a space to sit at the steps I had to practically sit on a lady's lap for her to move a little. It wasn't long before my husband and the lifeguard were there to help me out of the pool. My wheelchair was brought over and put next to the hand rail facing the pool. I bum shuffled up onto the edge of the pool, put my feet on the top step and was then lifted backwards into my chair by the lifeguard on one side and my husband on the other side. Obviously my legs were shaking all over the place but I made it.

At the side of the pool my husband was able to take my tankini top off for me whilst I covered up with a bath sheet before heading to the changing rooms to dry and dress. I was able to take my time and found it easier with my wheelchair reclining. Those who chose to peer into the cubicle and stare at me didn't see anything as I angled the wheelchair against the door opening and had the two towels to protect my modesty.

Unless you are body confident and choose a bikini, I would recommend a tankini over a one piece suit. I found I was able to dry quicker, remove the two pieces easier and if I had needed the toilet then that would also have been less of a struggle.

Once I was dressed, mu husband came and wheeled me back into the pool area so I could continue to watch the children playing. A couple of children splashed me now and then, but I didn't mind. After all, I was sat next to a swimming pool.

I was wiped out for the rest of the day and the following day, so didn't return to swimming during the holiday, but a lot of my fears have been put to rest now I know my current capabilities better.

It was also great to get to know the lifeguards during the break we had there. I knew I could trust them to help me if needed and also they allowed my children to use the pool the next day with me sat at the side in my chair (my husband wasn't feeling 100%). My son built a good relationship with one lifeguard too and the three of my children enjoyed all the extra water activities, including kayaking, water walkers and an obstacle course on water.

We have a longer family holiday booked for the summer, and I will definitely be swimming during that.

Blue badge application

When we go out anywhere, as you may have read in previous posts, we have an uphill struggle before we even leave our house. Two of our children have anxiety around going out, and with pathological demand avoidance and the anxiety led need to be in control, they have to know exactly where we are going, why, who with, how long for, who will be there, what will be there, what will it look/sound/feel like there, what the weather is like, who's idea it was to go, and then, only then, will they decide whether or not they can face going.
Once we get past this point, we then have to actually get out of the house- shoes, coats, jumpers, ipads, DVD etc all cause problems with three children with autism all trying to get their things on. No matter how we try and stagger this, or place their items of clothing in separate locations, giving them plenty of space, this does not get any easier.
Then we finally get into the van. On a good day we have done this without anyone getting hurt, without us having to physically intervene for anyone's safety, and without the whole street hearing that we are going out. On a normal day we have at least one child - usually one of our two with PDA- shouting, stomping about, slamming doors, screaming, crying, being carried to the van screaming, various states of undress as we leave the house and fingernails being dragged across the front door as we leave.

Then we get to where we are going. Parking is a nightmare. With a husband who has anxiety around busy places, finding the right parking space where we are reasonably close to our final destination is a priority, but we have a large van for this same reason, so we need a space where the neighbouring vehicles are parked within the lines, not those where people are slightly over or on the line. We then have three children with extremely limited danger awareness, who we try to navigate through the car park, making sure noone runs off as we get others out of the van. Invariable one of them will refuse to leave the van and time is spent convincing them that they need to leave it and come with us, preferably dressed appropriately for the weather conditions and wherever we are going. We have a special needs pushchair to help our youngest cope with her sensory processing needs and to enable her to cope with going out atall, so that needs to be got out of the van - usually through the side door as the van is long and we can never get to the back doors and be inside a parking space. Whilst we are putting up the pushchair, watching three children don't put themselves in danger, monitoring how busy the environment is, ensuring their ipads are safely stowed away,/held securely checking we have the ear defenders, gum, distractions needed for each of them, checking my husband is happy and coping and running throught the mental checklist of blanket, raincover, sunglasses, sensory bag, purse, phone, hand gel, dummy, cuddly toy, inhalers, tissues, snacks, drinks etc etc there is invariably someone waiting impatiently to squeeze into the car next to us. By the time we actually get anywhere we are ready to go home again.

If we are going outside for a walk then we also take our little dog with us - not so much for her to have a walk as she isn't generally interested- but so she can sit with our youngest in the pushchair for support, or so our eldest can carry/walk her which keeps him focussed on her, distracted from everything else and relatively calm.

Our eldest daughter is the most likely to wander infront of moving traffic- and has done so many times. We generally have our youngest hand in hand if she is able to walk, or in the pushchair, our eldest is usually next to me, but our eldest daughter has to hold a hand or hold the buggy to prevent her wandering off whilst in her own world. She has wandered infront of cars whilst counting kerb stones before now, only stepping on white lines of the zebra crossing led her into the path of a reversing car, she doesn't even realise when these things happen, just gets pulled back by me and then looks at me as if it was my fault. Patterns distract her so much it truly is a danger.

When any of them have too much sensory information input, or when people expect too much from them (because they all look 'normal'....yes, I hate that word too but here I feel it best describes how people view them and how that affects their expectations of them) then this comes out as escalating behaviours if we are lucky, or straight to a meltdown/panic attack, at which point we need immediate access to the van when we are out in order to allow them chance to de-escalate, or ride out the meltdown, which usually ends in exhaustion for them (and us) so they need somewhere safe and familiar to help them.

I applied for DLA for all three children before they had been diagnosed, and before we had a full understanding of all of their needs and behaviours. I need to revisit this application for our youngest, as her care needs and mobility needs are increasing, and are easily explained within her reports from her psychologist and occupational therapist. I am not sure how to do this and need to bite the bullet and find out.

Today though was our interview following my application for a blue badge for her. I am under no illusions as to the liklihood of us actually getting one, and am fully expecting to have to appeal the decision not to award her a badge, but had to try anyway. I truly do feel she needs one, and the recent news that the government is reconsidering the procedure for awarding blue badges to people with mental disabilities and hidden disabilities couldn't come soon enough.
The lady we saw today couldn't have been less helpful. She had no interest whatsoever in anything I had with me- reports backing up the need for my youngest to have regular movement breaks, her demand avoidance, anxiety, sensory processing difficulties, statements from professionals acknowledging her difficulties with going out and walking. All she seemed interested in was trying to get my daughter to say hello, then goodbye to her. As if that was going to happen! She was so anxious about going that last night was a real struggle, let alone being able to speak to the woman who was as dry as the dessert.
The space on the form to write the information on when she cannot walk, why she cannot walk, and why we are applying for the badge was no more than five lines long, and this lady had big writing. I understand that people with physical disabilities may not need much space on such a form, but there are thousands of people who have problems walking any distance, or at all in many situations, who need a lot of information noting down surely.
She wrote in the even smaller box for additional information, that we can park in mother and baby spaces! When I pointed out that these are few and far between, and often full and not in every place we need to go, she said that she didn't know as she has never needed them. This compounded my gut feeling on sitting in her office, where her lack of humanity and empathy were palpable, these jobs are literally given to anyone.
We have to wait a couple of weeks to hear a decision now, and I checked with her that there is indeed an appeal procedure, fully expecting to be turned down because physically she can walk, even though she can't. I honestly wish that the changes would hurry up and be approved throughout the UK to help families in positions like ours.

All cats have asperger syndrome

Wow! That's my reaction to this amazing little book.

If there was a checklist for a perfect book for my daughter, 8, it would read something like this:

1. Cute cover
2. Cute, fluffy, cuddly animals inside.
3. Not too many words.
4. Means something to me or makes me feel better.
5. Cute pictures.

Well, this book ticks all of these boxes and then some.

I love books, I love how they can help and inform people without being forceful, overbearing or being misunderstood. They do not require demands, they do not chase you or contradict you. They can bring about a full range of emotions in any reader, no matter their age.

My daughter has felt different for some time. She has verbalised this to us, and we have tried our best to help her, as you will know if you have been reading these posts so far. No matter how much we reassure her that she is not weird, she is different in a good way and to embrace this as she is amazing, I think it means more when it is in print than when it comes from your Mum.

We read through every statement before giving it to her today, Every single page means so much and made us instantly think of her.

When she got home from the care farm we showed her the book and the smile that beamed across her face said it all. She loved the pictures inside but more than that she recognised herself throughout the book. She was able to see that she cannot be the only one, because someone else wrote this little book.

If you have a child with aspergers syndrome, or high  functioning autism as it is now diagnosed in the UK, I strongly recommend this book. It will help your child not to feel so alone, is not a self help type book, but a pretty and approachable book with a neutral attraction and cuteness factor.

Is she alright??

Glad to be home again doesn't come close to how I feel at the moment. I have met the equivalent of Basil Faulty this morning, without the measuring presence of his precious Sybil!

(image from majorten.com)

If Basil Faulty did Specsavers could be an alternative title for this post.


(image from twitter.com)

My 8 year old daughter hates any sort of medical appointment or machinery/testing/pressure to have to engage etc but unfortunately wears glasses, so has to have annual eye tests. With our move last year and no problems with her eyesight or glasses, we decided to skip one and have been today.

Obviously, when I booked the appointment I made a note that she has autism and selective mutism, therefore the quicker and less faffing about the better. I also prepared her for what would happen so she knew what to expect at every step. She was actually pretty excited to be going there to choose some new glasses today- although I knew that would change when it came to actually being there.

It all went relatively smoothly- the pretest machine was not too bad, the optician included her cuddly toy in the appointment and had lots of patience with her, less talking and more testing, she chose two pairs of glasses and they fitted her- then they needed to measure her pupil distance. Without any explanation the woman who we had been dealing with called a man over (mistake #1), the man sat directly opposite my daughter, lowered his chair to her eye level and asked her to look at the top of the pen whilst he held a plastic ruler to her forehead (mistake #2), then, realising he needed her to stand up he asked her to stand without any explanation (mistake #3) and when she said no he asked me "Is she alright??" to which my response was 'Well, she has autism if that is what you mean? So the pressure of sitting opposite you not knowing what you are doing is a lot' accompanied by internal annoyance and anger that he felt it was OK to ask that infront of her and in such a manner. He watched me explain what he was doing to her and then took my lead and measured her cuddly toy's pupil distance and then hers with her sat on my lap and her chin resting on her cuddly toy.

I find myself so frustrated at the lack of awareness or understanding in some people- people who must encounter many people with autism every day in their work. He was lucky he didn't ask me that question with my son sat there- that would have ended very differently as he would have taken exception to his question without a doubt.

I am wondering whether to set up a form that I can then feedback to places we have visited and had such simple tasks blown up into issues for my children because of the ignorance of the staff there. Nothing malicious or nasty, just helpful hints to help my children and others in the future.

I am also left wondering what their approach to her would have been if she was either with a carer in a uniform, or in a wheelchair.....

We have a week until we need to return to collect her frames and have them adjusted to fit comfortably......then the dentist!!

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.