Autism and the Natural World.

Our Natural Environment!

When I think of the word natural, I think of Nature and the Countryside. That is because this is our family’s ‘natural environment’, and this is where Jay truly belongs!

We are extremely fortunate to live where we live. Trees and open countryside surround us, and thus, that is the world in which Jay has been raised and therefore it is natural for him to thrive in it. Before I knew Jay was on the Spectrum, and long before I knew of his Global Delay, he had an attachment to all things natural from the very beginning. As a baby, he would sit in his pram looking up at the world around him, smiling and cooing and making the average noise a baby does. Yet, there was a delight and pleasure in his expressions, that I now associate with his Autism, and what I now see each time he is let loose on this environment. I realise that even as a toddler, his fascination and wonder at his world was obvious. He noticed things. Small details other people may well miss! The way a spider’s web looks on a rainy day. Frost engrained on a leaf. Intricate detail on a Butterfly’s wing. Differences in the sky pattern in clouds, and the feel of the dirt on his finger tips! Looking closely at the way a caterpillar moved, and creating that movement himself. Drawing expressions on pictures of Natural things such as the Sun and Clouds. Painting a Desert scene after feeling too hot in summer! All these things told me how closely Jay was learning from, and using his Environment to further his interests and to calm his being and to make sense of the world!

It started with the sun. His pleasure at seeing it went beyond that which is normal, and his obsession with it became more and more obvious as time went on and Jay grew. From year to year, I discovered just how much it means to him. When he began to communicate through feelings and emotions, he linked those to the sun and rain. Yet even though he feels sad when it rains, he also loves to be near by and in water.

The natural elements of our world exist alongside us, and for those fortunate enough to look for them and engulf themselves in the wonder of them,  those people are blessed and that is what I realised Jay was doing! He was immersing himself in his environment, feeling it, exploring it, watching it with all 7 senses, whilst feeling the wonder and joy of the natural world to which he so obviously feels an intense connection to.

Autism comes with many mental health issues! Anxiety, Obsessional Compulsive Disorder, Meltdowns, lack of regulation, Phobias, inability to stay calm or calm oneself and panic on social situations, people, and all the demands that we the neurotypicals take for granted.

Many experts believe that the natural world can aid healing, calm minds and at times, treat all of the above! I personally agree, as I have turned to nature many times when I have felt stressed or anxious, and I always have shared this with all 3 of my children. But with Jay, it is different, as he is not aware of the benefits! He merely feels them! He cannot identify with the healing ability or know that he is out in the countryside for healing. I just have to look at his face when he is out, to know that it is beneficial to his mental health.

This is a photo taken of Jay at three and a half and he was sitting amongst Harebells in the moorland near our home. Before this walk, Jay had been in Meltdown all morning. Just look at his happy face and the calm way he is laughing with pleasure at being in the natural place he loves! The next photo shows Jay calmly watering our plants. Again, I had given this activity to him to calm him down.


Many people are aware of this power in nature that we have to calm and heal our minds. Jay is not aware and so it is more meaningful and more than enough proof that we need it , to realise that it is very real and very important! So many children, even neurotypicals are missing out on this side of human nature. We need nature! We need to be one with Mother Earth! We need to feel the sun and the light, and the rain and the earth beneath our feet, to stay sane and comfortable in this world. Simply watching the Stars and the Moon, can alleviate pressure and Anxiety and can quieten our souls and minds. Jay uses his natural environment to self-regulate and to calm, without appearing to do so. He does not realise or understand that this is what he needs, he simply engages with the world around him, in a simple and very beautiful way. This can be learned behaviour in children who do not have Autism. Indeed my own older two loved nature because I do. However Jay has not the ability cognitively to work this out. He acts in a spiritual way and appears to be completely in tune with the easy and predictable rhythm of the Natural world! Jay is aware of the surroundings and the places he goes, without seeking them out or deliberately saying he would like to go there because it makes him feel calm. He has no understanding of that! All he knows, is he is part of the nature around him, and he belongs there because he accepts it’s benefits with ease and without vanity or expectance. The healing that Nature gives to him is free but Jay does not have to ask for it, or does not take from it, he simply lets it fill him up and then, he has achieved the physiological benefit and becomes calm again.

I can derive from this, that Jay needs access to the Natural World, and I can give that to him where we live. Anybody can find a piece of Nature, even if you live in a city. Go to the parks, look at Butterflies on a garden shrub, or look to the sky for Birds. Look at trees in parks and look at what nature is there, and most of all, try and see the Sun and the Moon, and if possible the Stars. The predictability of these things, and the natural rhythm and sequencing of them, all help calm angry, hurt and anxious minds if only the opportunity is there. Just like Jay, these children will not need to be aware of the benefits, they will simply engage in the elements and feel refreshed at least for a while afterwards.

Being with Jay in the outside world can be thwart with difficulty some days. His Phobias are there and things like Bees and Flies and hard Weather can have the opposite effect on him, but this is a different subject because Phobias change the score. This is because, if they happen outdoors, then the benefit the child feels will be temporarily lost. If Jay has a scare whilst out, then we have to go back to the drawing board by going home from where it happened, and begin calming at home. It is just the way it is. If the Anxiety starts at home, then the Natural world will heal Jay, however if any Anxiety leading to Phobia happens out doors then the feelings will engulf. Once calm Jay can then return to a natural place, and the elements will then have the same effect and calm him again. It is a constant round of Meltdown to calm to Meltdown to calm etc until the day is done .

Speaking about Jay’s Phobias and how we help him through them will be the main subject of my next Blog post, and for now I leave you with some more Natural photos of Jay at his very calmest and at one with Mother Nature.



Next Time : Autism and Phobias




Reacting to Autism.


To my family and I, the face in the photo above, is the sweetest, most lovely little face we know!

Question: How can this face provoke so many diverse reactions?

From the very beginning of our Autism journey, we have had to deal with people’s reactions to Jay and his Autism.

I speak of this situation, because it is one of the hardest things to learn to cope with.

When you first hear the words ” your child has autism” you have to process this and it can take months to accept it and to stop reacting to it. The first reaction is shock. Then you feel relief that you were not imagining it. Next comes grief. Yes you heard me right! There is a feeling of grief there. It may not be the same grief as losing a person you love, but it is still grief. The knowledge that your child will never be ‘normal’ and will never grow up is a huge deal. For people like us who receive the Low Functioning Diagnosis it means the child will always need caring for, which means basically your life as you know it has completely changed and will never be the same again!

These reactions are perfectly normal and it is perfectly acceptable for you to grieve the child you thought you would have and to finally gain the last emotion, which is acceptance. The time frame required for this last emotion is subjective in that it is different for everyone and completely depends on personal circumstance. Some, take it in their stride, some go in to a period of low mood whilst they feel cheated of a regular right to bring up a child to adulthood. Others feel sad and many feel anxious! It is a huge under taking and is never without questions! Questions such as, what will happen after I am gone? Where will they go to school? How will I cope with meltdowns? How will I manage my job? The list goes on!

However, at the same time Parents are going through these emotions and adjusting to life with a child with a severe Disability, there is another pressing problem on our hands.  That is, how are we to deal with other people’s reactions to Autism and our child?

When Jay was very young, I already noticed people’s reactions to him. They would stare when he was screaming in his pram at four years old. They would stare because he was still in a pram at four. One lady said, as I passed by her, ” what’s he doing in a pram he is far too old and big” In the early days I had not the strength or the boldness to speak out. I just felt down every time we went out, because I could not defend us but neither could I get the stares and comments from my mind. I was not yet strong enough to cope with other people’s reactions. As Jay turned five and was diagnosed, I began to come to terms with the emotion that is grief. It came from many months of feeling isolated and alone. It came from Jay not progressing in any way and of Jay having no language. Panic set in that he may never speak. I was anxious as I watched closely for any sign of development. I also became much more educated on the subject of Autism and of Global Delay, therefore became more knowledgeable. This gave me more strength to speak out and get Jay’s needs met, both in School, and in our own life.

People’s reactions to my Jay were at times so obvious it bordered on rudeness. One day I had taken Jay to my work and was walking him up to his School on a morning. I had left his Ear Defenders at my work by mistake. As we passed by a shop, Jay began to stim. He was flapping his arms fast, and making noises. He was perfectly happy in his own way. A lady, who was opening her shop, stopped when she heard Jay, turned around to us and looked at him. She then scrunched up her nose in a direct rude way , sneered and stared!!! OOh I can tell you all, this was the turning point for me. I got brave! I had had enough- I was only human after all. I turned and stopped and looked her directly in the eyes, and said ” Would you mind not staring at my son. He has Autism.” I then gave her an icy glare and went on my way. The thing is, I still questioned myself about whether I was rude, but then I realised that I was actually responding to HER rudeness in staring and sneering at Jay. Therefore I was defending his right to walk about his home town without being ridiculed and stared at and judged. From that moment my Husband and I decided that we would always respond if someone stared at Jay or made rude remarks or sneers. We always said the exact same thing. ” please will you not stare at my child.” Simple , straight to the point and also shaming them to realise they are being offensive. It is not about being rude, or having a complex. These stares and comments are real and they hurt! They hurt Jay, who cannot defend himself and they hurt us because we love him. I believe that gives us more than enough reason to respond to these people!

We were in a café with Jay one Saturday, and Jay was making noises and stimming and he also was anxious and was close to a Meltdown. WE responded like we always do to Jay and we were helping him calm , when my Husband said quietly ” we have an audience.” I looked up and saw two people staring at Jay and pulling that same distasteful face. I ignored them and continued to support Jay and he calmed. We then got up to leave and Jay began to Stim and again flap and make noises. Once more the people looked up and stared again!! Why? Why would any one half decent do that to a person with Special needs? I just know that I would not dream of staring at and judging a family struggling with a child or grown up with Autism or any Disability. Maybe I am just a more kind person?

As we left I was so proud of Jay’s Dad who for the first time ever, turned to the couple and said “please stop staring at my son he has Autism” This had become our planned response. We were not doing this for any satisfaction of our own. We do this in order to enable Jay the right to not be stared at and ridiculed. The only way to stop bad reactions and disrespectful people, is to draw them out and pull them up, so that hopefully next time they will remember and not stare and make comments. Of course this is always done in a calm controlled manner. I will not lower myself to react angrily or in a uncontrolled manner. So, I always say it in a quiet calm voice, but the words penetrate the people’s minds and will go in!

Some people who read this , who are not Parents or family to a child with Autism, will tell me to just ignore them. Yes I could do that, but then they will continue to make people feel awful and isolated and this can lead to serious withdrawal  from the world, Depression and Anxiety and loneliness. This then directly affects both parents and child. Why should people get away with making SEND Parents and children feel like that? It needs to be said, however, what I have now learned to do is to completely block them out once it has been said. Another words, I do not dwell on it anymore and question it. I simply say the agreed sentence and forget it. Why do I do that? Because, my peace of mind is worth a thousand times more than those people who are so unkind as to comment on and stare and sneer at children with Special Needs, that is why!! If you do not have a child with SEND and are reading this thinking I am making a big deal of it, I assure you this is a very real and very sad problem, experienced only by those whose child is different. I know that everyone who reads this who has a child with SEND will completely have experienced this prejudiced and probably more than once.

This post is about the way society reacts to Autism, and how we , the Parents react. For that, I have to be honest and truthful and I am being honest when I say that other people’s reactions to our children is one of the hardest crosses to bear and it never goes away! Even when your child needs medical or dental care it is a problem. I have had Doctors who completely disregard what I tell them about Jay, and try to force him to do what they want him to, and I have had Doctors who completely get it and understand. I recently have asked my child’s Paediatrician to make us a referral to a Specialist Dentist, because the fantastic Dentist Jay had, has left the Practice. If you have an emergency, and have to got to A&E, if you do not see a Doctor who understands Autism, it will be a hard stressful situation and you will find yourself having to explain what they can and cannot do and how they talk to them too. Some Professionals just cannot be bothered with Autism and just want to get the job done and they do not care how they do it. The same can be said for Teachers. You get the Teachers who are wonderful and completely make every effort to understand Autism and the child’s needs, and then you get teachers who do not care a jot about it and to them your child is a menace and a trouble maker and they refuse to help. We all have experienced prejudices from the world around us, everywhere we go, and in everything we do.  Prejudice towards Disabled people is a serious problem now, yet training ourselves to not let the feeling in is where we find our strength!

“No one can make you feel inferior without your consent” This is a famous Quotation from a very wise woman and it is so true.

If we allow these people to get to us, they are winning, and in all account this amounts to bullying.  That is something I will not tolerate towards my child so I will defend his right to a peaceful existence where he can be himself and not be ridiculed for this. That is a fight worth fighting!

Reacting to Autism! Let’s all have strength to strive for a world where difference is celebrated and embraced instead of censured and isolated. That is a world to be proud of.


Jay and I – I am his voice and his light and he is my strength and my light!


Next Time: Autism and the Natural World


Autism and the Family- Relationships and Siblings




Family matters.

In this Autism life we expect the child with Autism to be central in the family’s world.

Yet, throughout the journey there must be two other elements that must stay also at the centre, and they are the Siblings and the Parent or Parents raising them!

The entire family matter!

If one element is out of place it cannot work. To suggest the child with the Disability is more important or is more special throws the whole establishment out of balance, because one cannot flourish without the other!

When Jay was born eight years ago we had two other children whom we had brought up in the Neurotypical way, and these two children were nine and twelve at the time of  Jay’s birth.

Bringing up Jay in the beginning , before we knew of his condition, was fairly straightforward, and although I had many suspicions, we just lived a ‘normal’ life. The children were always lovely to Jay and they really bonded with him, despite their large age gap.

When Jay turned three, and his Autism and Delay began to show itself, life became a lot harder. I believe this may have been the darkest time for us all, as we truly did not understand or know what was wrong. At this time my relationship with Jay’s Dad was more strained. Our life with Jay suddenly became stressful every day and for our older two, who were now a little older and heading for teens, i think it was also harder, as our little boy was no longer happy. I have discussed what happened at this stage before, as Jay began to struggle in the world and react with distressing results and more hard to manage times followed. We could not go anywhere without full blown screaming ( meltdown) and our familiy outings became thwart with stress and after a time we began to take this out on each other. I am talking of snapping, and trying to find ways to manage Jay’s meltdowns and arguing over the stress-we were only human and we were not always as able to handle it as we are now five years on. It is important that I tell my readers the way it was. This is the truth and I am not here to skirt on the harder side of life with a child with Autism as what would be the point? I wish to share the more trying times too and the way in which we slowly adapted and learned how to deal with it.

Because a lot of time was going into keeping Jay happy and calm and in dealing with really hard Meltdowns all day long, myself and my Husband forgot about each other and our relationship. We had zero time together to relax. I was working in a stressful job as a Manager of a pre-school, and my husband was a Team leader in his job. Our family life was full of the stress of coping with Jay, as at this time we could not help him as we did not know what was wrong. We only knew that he was different. We would take time out singely and so one of us was always there for Jay. At this stage we found the older two were also finding things hard. Jay’s OCD meant that every time they came into his space he would scream and push them away. Dont get me wrong he adores them, but they were supposed to in their space and him in his, and he defended that space sometimes physically. Between age three and diagnosis at five, we were on a journey of discovery, yet we did not know it at the time! It is only now I can write this and reflect on what was probably the hardest time of our journey, with dark times between myself and Jay’s Dad and for ourselves as a family unit.

It is prudent to say at this point, that many families split over Autism and likewise conditions. It is a fact! The stress levels of Parents with children with Severe Special Needs and the Siblings are higher than average, and this results in their health suffering. Both physical and mental health can be affected. There are many parents who have Autoimmune diseases brought on by the stress and I am one of them. Never mind that though, as this is not important for now, the point remains that it is very very hard to raise children with SEND and only Parents who do it know-truly know how hard it is!!

Luckily, our family did not split and we found our way through the darkness to discover that there was light at the end of the tunnel.

I made changes at work by stepping out of my Managerial role in to a senior role and went part time, and my husband also changed roles and so that was a start.

Once Jay was on the path to becoming diagnosed I began to research the condition more. I put to good use my Professional knowledge, when I realised Jay was actually delayed at Development age two.  That was my speciality age so I began to use statergies I used at work to help Jay. The introduction of a Now and Next board, the increased understanding and awareness of sensory isssues all resulted in our taking a more pro-active approach to Jay’s care. Simply using Ear Defenders on outings and at home, and using a SEN buggy all contributed to an ability to cope better with him, and his ability to cope grew once he was de-sensitised by these items.

Yet we still had to find balance. Our Ying and Yang were well out by this time. Years of no sleep, stress and sometimes sadness and grief at what we realised was for life, all took its toll on us as a family, yet we were not going to give in! We all found a strength, I know not where from, to endure, and to also conquer this condition and find a way to live with it. You understand, it was never Jay himslef who made us feel this way, only his Autism and Delay? Jay has always been a valued, much loved member of our family, and his gifts and special mind are loved and valued by all of us!

With five of us in the family, all our needs were not being met. My husband and I attended Training to help us and support us in caring for Jay and along side this they also offer Sibling Training too. This is given by the local County. Siblings are always going to need help. Our local charity who provide our Respite have many support mechanisims in place for Siblings. They understand that Siblings need a break from home and the caring side of Autism, and they need respite too! Our family care package which provides our budget for Respite, also takes into consideration the needs of the Siblings too. In the assessment process for Respite, their needs are recorded and Respite is provided with the whole family in mind. Often the siblings can feel left out or they feel they do not have as much of the care from their Parents, as they are too busy dealing with or looking after the child with Autism or SEND. They may have to listen to Meltdowns all day, or have their sibling invade their space or the child may expect the sibling to go along with their OCD traits. This happened to us and does still. Jay seeks control of his environment in order to manage his Anxiety and this affects my older two in many ways. For example, they are not allowed in the lounge wihtout Jay pushing them out. We do explain to Jay that he must not do it and this will often end in a Meltdown as Jay simply does not understand why this is wrong! This is Autism! They see only their own agenda and the Anxiety they deal with all day, each day, is so overwhelming that the only way they can control it is to have rituals and OCD rituals to help calm them. It is NOT naughty or bad behaviour and luckily my two older ones are, in my opinion, exceptional in that they get it , understand, and never get cross with Jay. I am very proud of their ability to handle their brother, love their brother and find a different way to enjoy time with him.

Having said that, they still need a break and respite gives them time in their own home, when Jay is on a trip with the charity, mainly just to have peace and the house to themselves wihtout being affected by Jay and his Autism. It makes them better people and Siblings, as when Jay returns and they have had a rest, they then are ready to understand again and help and support Jay. Like I say, I am so so proud of them both!


Ross, April, and Jay. Happy times together!

As a couple, Jay’s father and I, now have a well rounded happy life, and we have only got there due to the desire for knowledge on Autism, attending of Training offered, reading,  learning, applying for Respite and learning every little thing we could about the complex condition that is Autism and Global Delay.  We have , now, a high level of understanding of the condition and of Jay, because each child is unique, and also a desire to be the very best Parents and Carers we can be to Jay and also to Ross and April too! We have spent years working up to this moment. A moment when Autism no longer fazes us or worries us. We simply, as we say in Yorkshire, ‘crack on’ and get down to the task in hand, which to to support, care for , nurture and love our child with Autism and to meet his complex needs any way that we can, and without judgement on each other or the stress and constant worry we had five years ago.

No Parent can reach the stage we are now at, without COMPROMISE!

You have to have a period of adaption. I now realise that those hard three years , was in fact our period of adapting.

That we adapted and grew together, is perhaps a sign of our strength in each other, and a determination to grow and to succeed, all of which takes a calness of mind, an honest approach, communication with one another and love. We know now , that during our hard times in the early days, we were not communicating with each other. We were just winging it, struggling on, without any real goal, and it takes understanding gained from study to really get there, and you really have to ‘want’ to get there. To discover how to have a calm happy life with Autism and all it’s challenges within your household, you must first give a little of yourself to become knowledgeable and up to speed with the condition, and with the Internet and all the ways we can find out about it, there has never been a better time to learn.

We did not have this knowledge or ability in the beginning and seriously, until Jay was around six, and he is only eight. So you can see there, that it has quite honestly taken us three to four years to acheive this goal and of course, like many things in this life we still continue to learn and grow.

I just adore and love my teacher Jay-my inspiration, my joy, and my dear child and I am blessed to have two strong and caring nearly grown up children to love and cherish too, and a Partner, whom I have grown to love even more throughout our Autism journey!


As they are now Ross (19) April (17) and Jay at 8.           Jay’s Dad Ade and I!




OCD Traits in Autism-Jay and Obsessional Compulsive Disorder.



Having a child who has Autism is very fascinating!

Jay is constantly changing, and no two years with him are ever the same.

Autism- this condition has been present in Jay since birth, yet looking back, so many traits have developed over time, some that were always there, such as Stimming, and some new ones that rear their dark heads from time to time, becoming quite difficult to manage and live with!

Last post, I promised to talk about OCD. Obsessional Compulsive Disorder! According to Jay’s Psychologist, the OCD that exists with Autism comes in the nature of ‘Traits’ rather than full blown OCD, which can also exist outside of Autism. I accept that, however, Jay’s OCD controls his life and ours , so it is very significant whether it is just ‘Traits’ or not!

Those of us who live with or understand Autism, know that many people with the condition require sameness and control in their lives. This is a Paradox. It is simply proven to be true by many people with experience in Autism, and in those who have it.

We never saw OCD in Jay until he transitioned to Year one two years ago in his mainstream School. Things began to change very fast.  Being in Reception and in play based learning, meant that Jay had control of his day at School and the way they were taught was well in line with his Delayed Development. However, change was to come within a few weeks of starting in his Year one classroom, where more structure and less free play was expected of the near six year olds. This did not bode well for little Jay, who had been able to manage Reception play based learning quite well. The way a Year one classroom is presented, is different from a Reception or Nursery class. The whole environment is more clinical and more conducive to study and to the main elements of Maths and English. There are less picture based posters and less play and sensory based learning areas.

Very soon in to the year, Jay began to seek control in other ways, as he felt out of control with this new classroom less suited to his needs. He began to switch the lights off, close and open doors,  drawers and cupboards, turn objects and books upside down, and switch off computers. He cried whenever his Teacher opened the cupboard, or opened the door and would run screaming over to them to close them again! He would knock down displays as he wanted the objects to look a certain way, and would barricade the door so people could not open it! The staff could see he was showing genuine emotional responses to the opening of doors and turning on switches he had turned off. The Staff were keen to help us to get to the bottom of it all. Luckily they remained calm about it, helping Jay to manage his feelings by allowing him to have quiet time with his TA.

However, no one seemed to realise there must have been a reason for this behaviour. Children, SEND or not, rarely display behaviours for no reason. Ironically, it was not a School Staff member who hit on the reason, or even me! It was , yet again, his Psychologist. I went to see him with Jay and told him everything, and within ten minutes he had enlightened me to the real reason behind Jay’s strange behaviour and the disruption it had begun to create. The Doctor said that because of Jay’s Development Delay, coupled with his Autism, he obviously was not coping in the more rigid Year one environment because it was not conducive to meet any of his needs. Plus it had started with Year one. There were no play based learning, or Sensory play areas. There were no areas to hide away in ‘enveloping’ dens or hides and no pictures to support Jay’s learning.  Jay, had, at that time, the brain of a toddler, who could not read or write and the room made as much sense to him as it would’ve to a baby. Once again, this man had understood my child better than me! He said that, because of these things, Jay had felt out of control of his world and unsafe in this new room, not equipped for his developmental or sensory needs. He was really trying to gain back control by going around the classroom changing things and  this made him feel safer, calmer and more in control. He suggested the School make many changes to the room to meet Jay’s need so I headed in to School to share the ideas with them via the Senco.

The Senco’s first comment was did the Doctor want Jay to go back to Reception because that was not possible? I said that he had said that Jay could learn in the Year One room if adaptions were made. The Classroom was adapted to provide areas of Sensory based play such as sand and water and shaving foam. It had tents added for dens and an area especially for Jay with his sensory toys there at all times. In fact, the room looked so fab by the time they had finished, that I was told the other children preferred Jay’s areas to their own! The changes made, helped Jay to settle better and I am lucky the School acquiesced and were willing to make the changes.

At home, Jay was doing the same. He was shutting doors, switching on lights, closing cupboards and drawers and when his two siblings entered a room he began to force them out in case they changed something. It was very hard and stressful, yet they bore it so well bless them. A solution presented itself like it  often does at breaking point, when a friend suggested I make Jay a fidget box full of benign light switches, loose bolts, bicycle bells and old phones, in which to fiddle with and open and shut etc, thus creating opportunity for Jay to go to his box whenever he felt need of it, instead of using the household instead. Did this work?

Well, it worked in the beginning. The OCD behaviour went on and on and began to change and present in other ways. He would turn all my ornaments around, and turn books to their back cover. He began to request that I cut out paper pictures for him of his favourite characters from books or from interests. I made planets and insects and animals for him, and once drawn they had to be cut out. But not in the normal way. I had to cut around the shape but not right up to the shape. If there was a cut in the outline of the drawing Jay went into Meltdown. If the paper bent in shape, Jay went into Meltdown. If the drawings were not done a specific way Jay would go in to Meltdown. He wanted control of everything! Our Care Manager witnessed this first hand one day when she came to see us.  You may say, why not just say no? I have learned never to say the word ‘no.’ It hurts them! Hurts their feelings as it is so definite and so final. To a child with ASD ‘no’ is too final a comment and leads them to despair. I would say instead, ‘Not now or we do it later.’  So I made the items whenever he asked me to as a way of helping him remain calm and focused, because if it all went well, the activity calmed Jay’s OCD. It WAS the OCD driving him to want the drawings made and the repetition of making them in order, and over and over again also helped calm him. How many mums would make the same characters on paper every single day for a period of time without going crazy and saying ‘no we are making something else?’ But you see, if I say I wont make them, Jay’s face crumbles and he bursts in to heart felt sobs and will be so sad and then develop awful Anxiety. It goes back to my earlier post on parenting them in a different way. A neurotypical child would not ask for drawings of the same thing again and again and would also understand when it is time to stop. Jay does not understand. It is that simple. So, I do it, I do it to keep my son calm and happy and I need the patience of a saint to do this every weekend and holidays.

Below are Jay’s cut out drawings of a well known Caterpillar story, and he places them this way in their order every single morning before he does anything else.


The drawings are placed  in the same sequence daily and cannot be moved without a Meltdown happening. Jay is seeking control yet again as a way of calming his anxiety.

Over the years the cut out paper drawings change depending on his interests. We have had planets, minibeasts animals, pets and weather pictures, all are sequenced and carefully set up each day. It makes it hard to clean and to sit down!!! Jay will also cover up  holes and gaps in his house and at the side of his bed-he fills it with soft teddies. Holes and gaps drive him nuts and bring on bad anxiety. He had holes in his ceiling once, and every night he would stare at them and say ‘ don’t like holes ‘ He would ask to be picked up so he could see them closely and would not sleep until his Dad had covered them. I allow Jay to have this control , because it does not hurt us or affect us, other than helping him, and because it helps him to self regulate! This is OCD and Jay feels he has to do these things to stay calm. His Autism is driving these OCD traits NOT the actual  condition of OCD.

Jay has to have the same food every day. Any deviating will result in Meltdown. Jay eats a very healthy diet, yet each food has to be served the same way and away from other food and separated in bowls so it does not touch. His packed lunch is the same each day, and again, must be presented in the same format each day. He is restricted to only four main meal options as he has food sensory issues and phobias, therefore all his food is always the same for each meal. Luckily he will eat a good mix and so he remains healthy. It is his OCD that means certain foods cannot touch or be changed and again he needs this to feel safe and in control. Because he has enough of a balanced diet still, I do not worry and I give him the same each day. Some would not. That is up to them, but as you all know by now, I will support my child and help him feel safe no matter what, and without judging him.

Jay will wake up on a morning and when I go to him, he has never ever said hello or good morning. I say it to him of course, but he brushes me to one side to begin his rituals and OCD habits. He will get his Spider and soft toys and take them downstairs, then he will arrange his pictures on the sofa, move the cushions, put on his favourite children’s channel that all toddlers love, then rewind four programmes using our remote, which he believes is his, and then expects his breakfast on the table ten minutes later. God help us if the TV is off or he misses a show or cannot rewind it, if it goes wrong he will go in to Meltdown.  All these things are, to him, much more important than saying hello to his mum! I totally get this. Other mums would say things like oh how rude or make him say hello! It is the difference between the Autism mum and the regular child’s mum I’m afraid, and believe me when I say that my older two DID say hello and were expected to speak to me. It is all about understanding!  If you continue to expect a child with ASD to be the same and act the same as neurotypical ones you will not get anywhere. I say that nicely. It is the Autism that makes Jay forget to greet me as he does not see the point in it. I am there-that is enough for him and that tells him he is safe. All of the etiquette of the world means absolutely nothing to him, no matter how much I try and teach it, he will only say what is necessary, not what society says we should say! Jay lives in a completely different world to others and his world must be within his control for him to be happy. It is what you CHOOSE to act upon that defines the bringing up of an Autism child. I choose to ask Jay to say goodbye to family when they leave, and I choose to ask him to say goodbye to me when I go anywhere and leave him with a Carer, but I do NOT choose to interfere with his morning rituals which are necessary for his happiness and his ability to face the day!! It really does not hurt me or should I say I do not let those sorts of feelings in. This is because you have to learn not to take this stuff personally. It has little to do with you or their feelings for you. It is actually Literal thinking. They only do what is necessary and the way their mind works falls more to Literal thinking and so saying hello, when all they their mind tells them to do, is to do their rituals or OCD activities,  is exactly what they will do, with little thought for you. We cannot ask more of any person, than what they are able to truly give, and the key to accepting these traits is in understanding that it is not in our control, no matter how much we like to think it is!  The Child’s Autism will rule them not you the Parent in situations like these. They need us to understand them and react only when it is absolutely necessary to their safety or that of others.

Choose your battles!



Posts to come:

Autism and the Natural World.

 Rigid, Literal and Analytical Thinking in the Autism Mind.

Autism and Phobias- helping to over come fear and phobia associated with Autism.

The Calming Effect of Technology on the Autism mind-How Jay uses Technology as a Calming Mechanism.


In the Autism world, Anxiety goes hand in hand with the condition and Jay is no different here!

The Anxiety, that goes with Autism, is debilitating and over-whelming and I have seen it first hand. I cannot begin to tell you how hard it is to see Anxiety engulf your child, and prevent them from having a normal life.

From a very young age, long before diagnosis, Jay created his own way of dealing with the all day Anxiety he always had, and still has now! Many triggers would set it off, and finding the triggers got harder and harder, as they amalgamated and became hard to predict.

Technology. It exists for so many functions. One function it has, is to be of use to the child with Autism, who requires a diversion and relief from the ever lasting tidal surge of Anxiety on the mind. Jay was visibly anxious throughout the day, be it a home day, or School day, it did not matter, he was still anxious. Eventually we began to twig, that when Jay was engulfed in any activity that included the use of technology, he became visibly much calmer, and to our delight, the use of technology, stalled, and at times prevented or stopped a Meltdown, caused by the build up of high levels of Anxiety.

So, we began to buy equipment for Jay. We bought a Tablet, a Computer, and a music CD player.  Whenever Jay showed signs of high Anxiety levels , we would direct him to one of these to help calm him. In the beginning, it was music and his CD player that calmed the Meltdowns and Anxiety. He would put headphones on and would calm down. Sometimes it failed and the Meltdown would follow, the result of high levels of anxiety that could not be calmed. However, the number of these Meltdowns lowered, with use of the CD player and the calming effect it had. I believe it zoned him out. He had a distraction, and I think distraction is a very efficient coping tool for the children who have Autism and certainly for Jay!

Jay soon required more to help calm his Anxiety, so we got him a Tablet. For a long time and into Year 1, he used this Tablet, again as a diversion and a coping mechanism. Then, suddenly it was not enough again. He began to throw it and scream at it, and what was once a calming piece of equipment, became an actual trigger for Meltdown. It was then, that we applied to a charity for a grant to get a Computer especially for Jay. We received a Computer, that was fantastic, as it had a touch screen too so Jay was able to control everything about it. It calmed him and gave him a happy place to go to take his mind off his feelings and his debilitating  OCD and Anxiety. The funny thing was, he was jolly good at controlling the Computer! He got so good, that at School one day, he actually managed to turn the screen and it’s programme, completely upside down! The actual programme I mean, not the P.C! Nobody had ever done that before and the School had to bring a Technician in to fix it!! I offered to pay but the School wouldn’t hear of it! How Jay did it we do not know-we only know that he understands technology at a far higher rate than his developmental age.


Using forms of Technology to cope with high levels of Anxiety.


The biggest problem with using technology as a calming mechanism? Yeah-it can break!

Not good! When your child relies on that calming influence, and then that influence is suddenly not there, that is so scary for the child and Carer. Because we know that one of the biggest Meltdown triggers is things breaking and going wrong! It is unpredictable, unplanned, uncontrollable, and quite frankly, to my son Jay, it is the end of the world as we know it! I absolutely dread anything going wrong with our Computers, or Tablets or music CD players. We have one in the car and if it breaks Jay will go right there and then into a full blown Meltdown! Again, this is not bad behaviour, or spoilt behaviour. It is Autism behaviour. When that form of technology fails the child, they no longer have control over it and the calming effect is now gone and they are left with high Anxiety and all those feelings collide with the fact that the thing that they relied upon has now gone wrong and they feel powerless to fix it. Jay will shout at this point, asking me to fix it over and over until it is fixed! If it wont fix he will Meltdown. Once, our T.V went off and Jay could not watch his favourite shows after School. Those shows are always there for him after School, and help him stay calm, when he is trying to process the day, and  they mean everything to him. He has connections with the characters, he relates to them more than people, and he feels happy around them! Maybe it is because he can be himself around them, they are not threatening in any way, he does not have to put a brave face on for them, they are just there for him. So, when the programmes would not work this particular day, it was a massive trigger and Meltdown descended on to him in it’s all consuming fire! There is no reasoning with Jay when he gets in to this state. Simply saying stop will not make a scrap of difference, because the reason is not behavioural, although it may look it, it is physiological.

This is because, when a child with Autism, has constantly high levels of Anxiety, their body stays in a fight or flight mode all the time! That is exhausting for the child. Jay has these levels all the time, and the only things that calms him in our home are his toys and technology items. They are SO important to his well being! He needs the security of knowing his favourite T.V characters will be there for him after School, and that he can go to his Computer whenever he needs to, to help himself to self-regulate. If your child has these Anxiety levels, then it is absolutely imperative that they acquire self-regulating skills, because it is unlikely that the Carer will be able to calm them. It is a hard thing to accept , that your adored child requires other means than you to calm down, and attain calmness again. So I would suggest to Parents wondering whether to give in to the lull of technology, to go for it and get you child some form of it, to help then learn to self-regulate. I worried and worried that Jay would be addicted to forms of technology, but honestly, he has not, and when you are faced with a Meltdown that is so heart wrenching to endure, and even worse to over come, you may feel that the slight risk of addiction is nothing compared with the calmness attained by using these machines for times when they need to zone out. Jay has always done other things as well as his Computer, and because we have Now and Next cards for schedule, we are able to minimise over usage anyway. So maybe invest in  PECS cards and use them to ensure the child using the machine also has time for other activities-it works for us.

Today, I observed Jay using T.V to self-regulate.  I came in to the room, and he was jumping. His face was red and showing signs of a sensory overload coming on. I went to sit down next to him, and observed his breathing. It was fast and laboured. He was becoming anxious. I know these signs and they always lead to a Meltdown, so I continued to monitor his Anxiety levels , and suddenly he jumped much faster , and began to ‘stim’ He flapped his arms, and jumped fast, whilst making stimming noises and he continued to do this for a whole 5 minutes.  He then became visibly calmer, his breathing slowed and his colour returned to normal-he was calm! He had done it himself for the first time ever!! He had self-regulated!

I was so proud!


Jumping to self-regulate, using Technology to do so.

On a recent trip to a Walled garden, Jay managed to stay calm the entire time, but today we went for a walk using his SEN Buggy, and Jay was crying the whole time saying he wanted to go home. Jay has an attachment to home at the moment and we are very much struggling to get him out anywhere. He cries out and shouts ‘no’ every time we say we are going out, so now we are saying to him simple consistent phrases to help him to stay calm on any transition or change to the day. We now say “ first trip, then home” This is using the First and Then strategy and it is working to a degree and we will continue to use this way of communicating a change to him. However I am concerned about the big change coming with School beginning again. Last year when Jay started his SEN school he developed a severe phobia of bathrooms and it got so bad he was with- holding and would not enter that room- it was a scary time for us as it was escalating as many of Jay’s phobias do.

So next time I write, I will tell you all about one of the most challenging traits Jay’s Autism brings-OCD- Obsessional Compulsive Disorder


At the Walled garden -a successful trip out!



Low End to High End -a Two Year Old Mind in an Eight year Old Body


Once upon a time , there was a very clear picture on the way Autism is diagnosed, and in some areas of the UK there still is.

There even appears to be an existing comparison between the High and Low end of the Autism Spectrum, that exists both in the Professional world and the Parenting world!


In our area, they have changed this, by making it simple. On Diagnosis, children are not marked as Low or High Functioning Autism anymore. They are diagnosed with simply Autism Spectrum Disorder or ASD.  The one and only reason I know where my son is on the Spectrum, is because I researched it after Diagnosis, and because he has an added Diagnosis of Global Development Delay which, is only ever seen in the Low Functioning type!  So, what was the reason for my Health Authority changing the way they diagnose Autism? I actually asked on the day Jay was diagnosed, and I was told it is because of the general assumption, that a child with Low end requires more care and is worse than a child at the High end. This leads to those with High- functioning or Asperger’s, potentially being left out and missing out on the vital help they require. This is because it is considered a milder form of Autism than the type my son has. Those who have the high end types and their Parents were left to fend for themselves, and to be honest with you all, I believe from the people I speak to, that this is still the case, even with the one type of Diagnosis being given to ALL children in our area.

I speak a lot to Parents in my area, as I am quite well known in my local town and people know I have been through the process.  Every one of the Parents I know have children on the High end or Asperger’s Traits. This means I get to see the way they are treated at their Schools or by the Health Professionals, and how support in Education, for these high end children is thin and not constant. These children struggle at School, because their needs are not met. The Schools cannot get Funding for these children because they are not deemed ‘bad enough or severe enough’ to receive support and funding for extra TA’s or Educational and Health care Plans. This is happening everywhere and is causing a crisis, as I am sure many of my readers will be aware of.  Obviously, the way we get diagnosed could be responsible for this, along with lack of Education and Training in Teachers.

For us, our path to support ran smoothly from the very start, as Jay is on the low end of the Spectrum and has Global Delay, therefore, help was always granted to us.

In some way, the type of Autism Jay has, can be worse than a child with High-Functioning in terms of the fact they are like two year olds and have little or no language. High end, typically are not delayed and generally do not fall behind in School and can take some of their care on themselves, however, this does not mean they can cope in the world! Often the children and young Adults on the High end are stuck in Mainstream School, with staff who do not understand their Special needs and who cannot support them all the day due to lack of funding and training, therefore these children are at a disadvantage already without the required help they so desperately need. They also have many of the Sensory issues and mental health issues that come with the Low end, yet they have probably a third of the support that severe children get. I know it may be a matter of money, but I do not accept this as a excuse, as there are too many children right now, who have supposed more milder forms, who do not even have a School place, or have help, yet children spend six hours a day in school, so to not put in the correct level of care and support in place for them is a disgrace to our nation and is letting down children and Families big time!

On the flip side to this, was our Parent Training course, offered after Jay’s Diagnosis, which we felt , covered Autism mainly linked to High-functioning.  We attended six sessions and were the only parents present whose child was Low-functioning. By the time we got to the third class, we began to realise the course covered no references to globally delayed Low-functioning children and we felt left out and forgotten about. All the information we got came from books and the Health Professionals we worked with after this. I left honest feedback to the course tutors and told the truth. I said you have to cover more severe end children, as the whole course content dealt with many of the high-end traits like being exceptionally bright, and support in Mainstream school etc. The best thing we took away from the course, was an introduction to the Parent Liaison from Jay’s now attended SEND School and an early visit to this School arranged by this lady. So I am grateful for that. Generally speaking though, there is no need for the comparisons between the Spectrum ends because all of the types of Autism including rarer forms such as PDA ( Pathological Demand Avoidance) and also ADHD, require the child to receive good all year support so that they can reach their full potential, and that after all, is what the legal SEND requirement is for all children, although we all know it isn’t happening!

Jay’s Low-functioning Autism causes him many of the same challenges as upper end children. It is his Global Delay that challenges him the most. With lack of understanding of language and his surroundings, Jay is incredibly vulnerable and as I have told you all before , has no understanding of danger or his whereabouts or even who he really is.

Jay requires access to Sensory activities daily. Jay sees his teddies as real personalities, he chats to them in his own language, and includes them in his every day life. He even makes me ‘talk’ as them, asking ” Spinney and Crawly want to talk”  I then have to put on a high pitched voice and speak as the Spider teddies he loves.  I use them to teach him about the world. When we go out with Jay, we see Jay being spoken to as an Eight year old as he is very tall for his age and they probably imagine him to be ten! I was buying him an ice cream last week at the Railway café near our home, and the lady serving asked what flavour he would like. She addressed this question to him, and he of course did not answer. The lady waited and I spoke saying that Jay would like Strawberry please. I knew his favourite flavour and had to speak for him, as Jay will not look at, or speak to people, even his own family at times. He will give eye contact at times if its on his terms.  The lady then said to me ” does he want a flake?” I think she had cottoned on at that point. I encouraged Jay to say thank you by saying ” say thank you Jay”  Jay’s response was to say ” say thankyou Jay” Can you hear in that what he was doing? He was using  ‘Echolalia’ -the repetitive use of random phrases heard in his life but not understood. Another trip out, we took Jay to a toy shop and once again the shop assistant asked him a question that was perfectly in line with what she thought his age to be by his height. This time I said to the lady in question, that Jay would not answer as he has Autism. I just had to say it. I do not go around telling just anyone trust me, but sometimes it is necessary as people just look so offended that the child has ignored them and I also feel the general public should know so as to be more educated about Autism.  If Jay has his Ear defenders on, people tend to know something is going on, yet if he does not it is an invisible Disability and they then react in a quite different way, than if the Ear Defenders are on him thus announcing that there is Special need there. On the other hand it is nice when people speak to Jay and I certainly would not want him to be ignored. I just wish Autism and Global delay were more understood, in all forms and in every way.

One of the things I love the most about Jay, is his ability to see the world in complete black and white. An ‘absolute’ place, where the rules control the fun, and where he can look in detail at the beauty around him. Jay is probably the most challenged young person in my big family, yet his life is simple, consistent, and straightforward – it is the neurotypical people of the world who complicate life and make what should be a happy place, at times unhappy. I love, that to Jay, the whole world around him is his playground, and a wonderous, amazing, and  beautiful place in which to live. I sure wish I could see the world through his eyes and that the world was truly like that. Yet we can all learn something from the people of the world who have Autism! That is, to appreciate what a stunning world we live in, to look for the beauty it offers, and to keep alive a warm and happy spirit and a loving heart -appreciating all that we have and all that we know to be good and right in this muddled world of ours!



Next Time: The Calming effect of Technology on the Autism Mind!- How Jay uses technology as a calming mechanism.



Life before and after Diagnosis-Support and how to acquire it!


Jay is generally a happy child! If all is right in his world he remains calm and contented in his home and the surrounding areas! However , this has only been achieved by the many ways in which we and others support him, and that takes us back to way before he was diagnosed and the chaos our life was with the onset of Jay’s Autism.


Trust me, we cannot achieve a relatively calm life with Autism if we do not receive help in some form. Even if it is just surfing the web or reading a book, we are still being supported and educated. The level of support we can receive for the child and the family depends on many factors. Where you live, your Local Authority’s generosity, charity support availability and outside family support, plus the severity of the child’s condition, all contribute to the help a family may get.

Before Jay was fully diagnosed in 2015 at five, we had a few hours one to one in Jay’s reception class. This stayed the same after diagnosis to begin with, until the school requested an Education and Healthcare plan or EHCP from the Local Authority. It was not until Year one , that this was granted and suddenly it was totally different! The School now had the money to provide a full time one to one, although I was amused when the County Hall lady sneakily suggested we did not have to spend our allocated budget on a one to one! I was not to be tricked-I was going for the one to one.

We also received an invitation to attend Parent training for Autism-our County council called it Cygnet Training.

Outside of school life I had already been given the contact of a local Charity, who provide Respite, support and help to the families of my area. It was this person to whom I first admitted that things were getting difficult with Jay’s condition. The Care manager informed me that for Respite care I would need to self-refer to the County Council’s Social Services Disabled section for an assessment of need which would be completely personal to our situation. It was with slight trepidation, that I picked up the phone one day after several meltdowns from Jay, and made the call that would change everything!

We met with a lovely lady who was a Social worker for the Disabled Services Department from the council and from the start she made me feel comfortable with the process of assessment. The assessment not only  took into account Jay’s needs, but also the needs of my two older teenagers, myself and my husband! She said that the whole family matter when it comes to accessing support . She explained that a Parent who has time away to breathe and to rest comes back doubly strong to handle whatever  Autism throws our way, therefore the child is cared for better. It acknowledges, that what we do is different from normal parenting! We are not just Mums and Dads, we are Carers! And Carers work 24 hours a day! So to keep children and families safe from over load and too much stress, which can really affect your health and the child’s, they provide budgets for families to either use to have time away which is called’ Short breaks’ or to refer on to the Disabled Children’s Team who provide long term year round support. This is mainly for severe cases and we qualified. Jay’s condition had become more complex when he turned six, with full blown severe OCD (Obsessive Compulsive Disorder traits) kicking in, high end constant Anxiety and severe life debilitating Phobias that completely ran our lives and his. So, we received a budget from the County Council, to use for Respite provided by the Charity group  I mentioned earlier, to look after Jay at times, either in the home or out on trips organised by the group. This was all funded by my awarded Budget. This is the way it is- these budgets can be life savers, and the biggest event not long after we received this, was a development in my own health which left me with a debilitating health condition which affected my mobility, and caused constant chronic pain and fatigue. I only mention this because I now required help for more reasons than before as I was so ill – and required rest every day to prevent awful flare ups happening that meant I could hardly look after me let alone Jay. So, that phone call I made that day to self -refer was obviously meant to be. The support we have received helps me, but most importantly , it enables Jay to safely explore the world around him with other people as well as us. You see, before this, Jay would meltdown in every single place we took him to, due to his Phobias, OCD and Anxiety, meaning distress for him and my other children too, and it became impossible for us to go out without extreme reactions from Jay. The reason the respite supports Jay is because when he goes out with the charity he does not react in the same way! Just like in School, he ‘holds it together’ for them, only to meltdown on his return to us. Therefore, Jay is able to see the world calmly and without reactions. We are his ‘safe people’ and for us, he would go in to a Meltdown, yet for them he would not. Therefore he was getting experiences he would not have got with us. We have to understand here the effect of Delayed Processing.  Jay would go out with us and react immediately or later, yet for the Respite workers, he forgets that and processes things in the day later on. These children, are often in distress in the outside world, and trips with Parents are often full of Anxiety and Meltdown. These children require someone other than their Parents to show them the world.

Let me tell you something here!

To actually allow your precious child to leave you to go on a trip with someone else is very hard-and for those of us like me, that adore their children and prefer to care for them ourselves, there is a certain amount of bravery and selflessness that enables us to put that child’s needs before our own. For reasons that are hard to swallow, my son needs to be without me at times in order to function outdoors. With me, he would always meltdown- I was the ‘safe person’ and therefore I have had to let go of the feelings that come with the fact, that my boy can not cope or stop going into meltdown when he is with me, but does stay calm for others who he has to care for him through Respite care. It is similar with School. The Delayed Effect is actually being studied now and certain Professionals are being made aware of it. It is what makes our Special Children hold it together in School or with Respite workers and then eventually let it all out to us the ‘safe people’

If you decide to progress on to more formal means of support such as County Council SEN budgets, know that you are doing it for more than just a break! Of course it is a break and that is nice, however the real reasons go far beyond that. The service is called Prevention because looking after a child with severe Special Needs is stressful and  tiring! Sometimes people are going without sleep due to their children not sleeping which is common in Autism especially and are exhausted. An exhausted Parent is not much use to any child and these children need help, and sometimes that help I am afraid needs to come from Professionals, and letting them in to your home and life is hard at first, but just like everything else you soon adapt and one day you may say “what did we do without this amazing support?” I can honestly say Jay is so much happier when he has been to a Sensory room or a hydro pool with his charity than if he was home all day consumed in the Anxiety, OCD, and Phobias that go with his condition which is : Low-functioning Autism and Global Development Delay.

Please, never , ever allow any other Parent to shame you for accepting help. If they do not want it that is fine, but many parents of kids with SEN admit to having high stress levels, lack of sleep, tiredness which can be sometimes debilitating, and they need a break!! Don’t ever feel bad for being human! We are only human and its blooming hard to care 24 hours a day every day for a child with severe conditions and a break is good for both you and them!

We love our beautiful Special Children! I love my Jay-he is wonderful, special , unique, and fills our life with happiness-we just need some help sometimes!



Next Time: Low end to High end – Differences and Similarities -Jay’s Two Year Old mind in his Eight year Old Body!