ATOS and what the professionals should really be told about Aspergers.......

Yesterday was a prime example of what it’s like living with Aspergers. My son awoke to find he had no internet connection and as the day wore on his temper got worse and worse and he became more and more frustrated. You see ,he had planned to go online with his friends and he couldn’t. Everything I could say or do to pull him out of his depression made the situation worse until his response to anything I said had descended either to a swear word in reply.or thumping loudly around the room in defiance.

I recognised the signs , it was  time to walk away. He followed me into the kitchen, took out a kitchen knife and ‘pretended’ to cut his shorts and his legs with it. Having been there before the thing then was to decide how to de escalate his anxiety. Fortunately my tustle with the bread knife was quick and without incident so he obviously didn’t intend to use it. but either of us could have been cut. Cue to hide all kitchen knives away AGAIN.

I was taking my daughter and friend to town so suggested he come too and we would go and see his gran. Fortunately he agreed and got into the car, head in hands.

 Having dropped the girls off we went to grans and he sidled into her front room without a word, before sitting down for five minutes. As conversation turned towards the internet he began to become more distressed, stood up and walked out onto the street where he sat on the pavement out of view of mum’s window. Five minutes later I followed him into the street and sat with him for twenty minutes or so and was then allowed to massage his scalp to calm him down.

He finally allowed me to pull him up and usher him back into the house where gran (bless her) had a film on standby which he started to watch, enabling me to shoot off and get my much needed shopping and pick up the girls.

To anyone reading this who doesn't have an autistic child this may sound shocking, it may sound like I’m being blasé, but I’ve decided to share our story as this really is happening in many families across the UK and things need to change. As a family we have found out the hard way that there is no emergency help – in fact there is no help at all.

 Autism is not a mental health condition so the children’s mental health service (CAMHS) don’t want to know. The trouble is there are no Autism specific support services either  so you end up with the wrong help which at it’s worst can be more damaging than if you hadn’t been in the first place

. That’s why I choose what services I want – it’s not that I don’t want to help my child I DO but I want long term support for anxiety before he ends up with mental health problems not some ‘quick fix’ from which you are discharged after six weeks. Aspergers is a life long condition   – it doesn’t just ‘go away’. If you manage it well you can lessen the impact and help adult autistics to live a much happier and stable life style.

 They may not always to be able to work – it’s not that they don’t want to. It’s just that there will be times when it all becomes overwhelming and they will just need one less thing to deal with so that they can handle their anxiety.That’s where the ATOS assessment for working capability has been going wrong. A person with Aspergers may seem to function well one day but may struggle  the next. You have to take it day by day. And as for today – well we will just have to see.It doesn’t bode well. The internet isn’t working again….

The times they are a Changin'

Looking back over the last twelve years I can reflect on how things have changed both in my attitude towards Autism and in my son's way of dealing with it.

Back in the year 2000 when my son and daugter were born I knew nothing about the condition. In fact I remained blissfully unaware of it for the next four years until my son started school. At first I thought his diffivulties settling in were due to him being an August baby. If I'd been told it was possible I would have held them back for a year as they missed a whole year at home which their older brother had been able to spend with me because he was old in his year, In retrospect it wouldn't have made a great deal of difference but it would have given my autistic son a year more of being happy in his own skin.

School showed him he was different, teachers described a child I didn't recognise, one who wouldn't sit with the other children, didn't like the playground because it was too noisy and got angry to the point of running away from school.

At the age of five it's difficult for a child to explain how he feels and sadly for us the school didn't tell us the truth .After meetings with educational pschycologists, home school books and constantly being cornered by teachers every night at school when I went to pick up the children from school . the stress of school started to spill over into home life and when I finally found my little boy in the kitchen pinching his arms and hitting his head I decided no more.......

Home education didn't cure everything but it did give us space and time to understand one another and I'm still learning. I clearly remember my son regressing to a 'baby voice'. It drove me mad at the time but I recognize now he was stressed and. several years on he doesn't do it .In fact I'd forgotten about the episode until someone reminded me on a forum the other day.

There was night after night of  'wanting to be dead'. It was heart breaking and I didn't know what I could do to help. We both know now not to talk but to sit quietly together whilst I give my son an Indian head massage as it relaxes him and seems to 'unlock his brain' so that he can think straight. Thank fully thoses episodes are behind us, at least for now!

Then there was my need to control him  versus his opposition to anything I requested. It caused a lot of arguments and I felt like a terrible mother. Having accepted him for whom he is and realising he doesn't need to do things just because society expects it has made a huge difference to our relationship and there are far less arguments.

With age comes maturity too. We have been through periods when my son has been unable to leave the house and has refused to let me leave. Times when he has lain down on the floor in the supermarket overwhelmed by the sound and light and unable to move. Times when he has screamed and sworn at me in the carpark because I diverted slightly from our original plan and he couldn't cope. I won't say it has always been easy but I do know that  the bumpy road of Autism  has involved climbing mountains and running down valleys.. Lifes challenges have subtley changed and what once posed a problem pales into insignificance or is absorbed into 'normal' family life as you adapt.

The message I'm trying to get across to those having a hard time of it at the moment is that  things change and it won't be like this for ever. It's a bit like a worried parent of a toddler being reassured that 'he won't be doing it at 18', although with an autistic child there are no such time scales.Children mature at different rates and children with Aspergers tend to be a few years behind their peers with many living skills.

At the moment the main challenges in our house are food, insomnia and reluctance to go out. The first is a sensory problem, the second two more to do with anxiety I think. We are however riding the waves. Our son seems happy, there is no anger or sadness and we are managing to work round it so that family is content.

Life doesn't come with a Road map

I've become aware recently how my parenting style has changed over the years. Much of the change has been due to that fact that I realized that normal parenting styles didn't work for my Autistic son- the more I tried to get him to do something the more he wouldn't do it.It wasn't just 'stubborn'.it was more than that. I would describe it as 'entrenched'. As a teacher once said to me 'it's as if he boxes himself into a corner and can't get out'

If all my children were like that I'd have realized that I was doing something wrong- but they're not.They are pliable and can be persuaded to help out round the house or do things I need them to do. With my Autistic son the tactics I use to encourage his siblings didn't work so I had to look for other solutions.

 For anyone who doesn't know me (or who doesn't believe there is anything wrong with my son) there have been comments about letting him get away with things , I was once told by a gentleman in a supermarket that 'even Autistic children can be MADE to behave'.

 At times I have cried at the judgement of others on my parenting skills. NOW I know that ,rather than controlling my son , I have to let him take the lead.It's worked too- he is far less explosive and angry when he is allowed to show us what he feels comfortable with.

This style of parenting has affected how I handle my other two children too. I used to try and 'control' them, now I hope I am more intuative towards their needs, So many parents (albeit unwittingly) are manipulating the direction in which they want their child to go. I have witnessed parents arranging 'play dates' for their children (if you can call them play dates for 12 year olds) Many I have noticed are single children or children who don't socialize well There's nothing wrong with making arrangements for your children to get together as long as it's a result of the express wish of the children. Sadly all to often it's the parents who 'want' their children to have friends and worry about lonliness. I believe that children have to make their own friends they can't be coerced into it however subtley and you should only help them if they want you to.

My eldest son and my daughter are sociable creatures and we rarely plan anything in advance although have a steady flow of telephone calls and texts arranging for them to meet with friends or go camping . This morning my daughter has set off with her friend to her friend's farm where she is going to work all day then come home and camp in the garden. My eldest meanwhile has arranged to play football on our local astro turf. I haven't arranged anything I'm just the chauffeur and 'facilitate' their plans.

My Autistic son however doesn't socialize a great deal - he doesn't enjoy small talk although he is prepared to talk for hours about the latest PC or Xbox game. He doesn't lack friends although, apart from two the rest are online and he is building up a relationship with them. I'm in no doubt that one day he will ask to visit one of them.We have already had a visit from a friend in Bedford who he has known online for over two years now!

It's the same with exams and school. I have encouraged my son, who is due to go to college next year ,to study subjects he enjoys. So far it has paid dividends as he has done well in his non compulsory (read non academic subjects). He is motivated and knows what he wants to do and that is the key. So many 16 year olds aren't ready to make that decision but are being 'encouraged' to take certain subjects to 'ensure they get a good (for that read 'well paid') job.

 Several children have gone back to school to do retakes. My son has asked that if he doesn't do well that he isn't sent back.I wouldn't dream of it - he needs to want to do it for himself not because I want him to.He can always retake a subject later if he wants too and it's relevant to what he wants to do.
It would take away so much stress for parents and pupils if they accepted that different people mature at different times. There is no rule that says you have to go to University at 18 (or indeed that you have to go at all).In fact my son wants to do motor vehicle maintenance at our local college and his grandfather told him that in his local garage the owner's son has just returned from university. Despite studying motor engineering he is now having to do the same course as my son to get the necessary practical experience.
If we let our children take the lead and try not to control them with our wishes and aspirations then our lives will be a lot less stressful. In fact I read yesterday that my new style of parenting is called 'peaceful parenting'. A few years ago I would have judged this style as being too lenient and letting the children get away with things but so far they are proving themselves to be mature and responsible individuals with a respect and tolerance for others and as long as it stays that way I MUST BE DOING SOMETHING RIGHT!

Aspergers and agoraphobia

Making the most of a good Day

When I started to home educate I had a picture in my mind of beach combing, walking in the Autumn woods and visiting museums.
For many that is how it is. Not that long ago we were able to have some fantastic weekends away visiting, London, Manchester, Halifax , Bristol  and  the wonderful countryside on our doorstep has enabled us to sail on Coniston water, climb Gummershow and jump over limestone pavements.
However over the last year, as puberty has hit my twelve year old son who has Asperger Syndrome  I have seen a decline in my son's willingness to go out. It came to a head on Friday when a suggested trip to our local shop resulted him holding a knife to his chest in fear at the thought! It is a terrible thing to see your twelve year old child so anxious about something as little as stepping out the door but to him it is enormous!
High anxiety and fear of the unknown is common in children with Aspergers and we are not alone ,but it is hugely stifling and needs to be addressed. I have learned that I am not the person to fight this battle. As the main educator and person in authority throughout the day my sons physical violence and anger is directed at me if he perceives any criticism. Living with him is like walking on eggshells and I have learned to pick my battles. In contrast my son will immediately do what his father asks of him.
This is not because I am unable to discipline - if I had bad parenting skills then my other two children would misbehave but they don't. This is down to the condition Oppositional defiant disorder. If I chose to discipline my son in the same way as his siblings in the normal day I would spend my life fighting with my son, Something which is draining and exhausting. I have learned to pick my battles and that means when it comes to having a bath, cleaning teeth or going out on non urgent trips I wait for my husband to be present I then know that my request will be carried out (eventually) and that violence will not be directed at either my other children or myself.
 I have struggled with  the fact that he can be disrespectful, swears at me and has the capability to be violent however I have learned that normal strategies are inappropriate. These behaviours result from severe anxiety and stress and my main role is to keep them under control so that Family life can function. Educating-Oppositional-Defiant-Children and The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children have been confirmation to me that my strategies are the right ones. Despite criticism from parents who have 'perfect children' and can't understand how any child could be badly behaved unless the parents lacked the correct parenting skills I have stood my ground. I know my child. Sadly requests for help dealing with anger and violence from our local CAMHS have been to no avail. I have learned that not only is there a lack of ressources but a lack of specialist knowledge in Autism too.Some of the advice I have received would have been downright harmful had I followed it. One locum pschyiatrist criticised my decision to home educate and suggested I put my child straight back into school to learn socialisation skills. Perhaps she is unaware of the terrible bullying that some Autistic children receive at school or that children like my son spend half their lives being excluded because mainstream schools can't cope, or that suitable specialist schools are not available in this area! My son is above average intelligence and our local special school is for severely learning disabled children!
My experience of this system shows that this is not the place to go for help with my sons agraphobia, at least not for now although we have a campaign locally for better services after an eighteen year old with Aspergers comitted suicide lately, having been diagnosed too late (at 15) and having had inadequate and appropriate help.
Instead for now I will be seeking help from parents who have been through this, and adults with Aspergers to see how they handle it. They after all are the experts! I will also be reading as much information as I can to equip myself with strategies to help my son.Hopefully in time our children will get the support and expertise to which they are entitled from our NHS.

Diet and Autistic children,

What children need is not new and better curriculm but access to more of the real world; plenty of time and space to think over their experiences, and to use fantasy and play to make meaning out of them." John Holt


Until quite recently my son has happily eaten most of the foods I put before him. Granted,like most children he has a penchant for chocolate and fizzy drinks when given half a chance but he will gobble down an indian curry, a roast dinner or a cajun chicken wrap without much persuasion.
I remember as a toddler he would often go for hours without a drink and it would be necessary to remind him to drink a glass of milk or water if he became too absorbed in his activities. Even now he will often forget he is hungry when absorbed with his X box or computer. However I have noticed that suddenly he 'has gone off' most of the foods he would eat until quite recently. He doesn't like, the beefburgers we have always bought.The sausages taste   'strange'. Even pizza isn't the same as the one we usually get.
I have become quite used to the grimaces of distaste as I place a lovingly prepared meal in front of him ands he rises up silently and walks out the room as though in some way I've offended him. I have tried to ignore it, it's nothing personal and he will get something when he is really hungry and to a certain extent it has worked. However yesterday, having spent a lovely afternoon at the cinema we came home and I offered him a bacon sandwich. The day before his grandma had come round and he had tucked in to two bacon sandwiches and professed the bacon to be 'much better that mums'. There was some bacon left and he accepted the offer but when placed in front of him he turned up his nose and said he didn't like it like that! I bit my tongue and said I would eat it for my own lunch instead. An hour later I was about to pick up his siblings from school when he said he was very hungry. I explained wearily he would have to find something as I had to go out and he went over to a bag of mars bars and took one, I suggested that it might be better to choose something more healthy and then found myself at the end of my sons fist as he screamed and swore that I hadn't offered anything to him to eat! *He was very sorry afterwards that he hadn't been able to control his anger and it is an issue which we need to address as a priority as it is the most debilitating part of my sons autism and will only become harder to manage as he becomes older, but the matter of his eating habits is also of concern as no matter how hard I try his food is 'wrong'. I am considering a nutritionist with experise in Autism, have been to the supermarket today and bought several ready made curries as a back up when we are eating lasagne or chilli and other meals he professes not to like. I have spoken to other parents and learned that it seems to be a common problem with teenage Autistics and I can only researcgh and experiment and find out more about it. My son has learned to make a milk shake today and we have bought a variety pack of cereals for him to eat whenever he is hungry as hunger is no doubt contributing to his bad temper and anger. I will share my experience as we learn together how to keep him fit and healthy and how we cope with his anger issues which to date have not been addressed by the professionals supposedly in charge of my son's mental health due to lack of ressources and inappropriate expertise in our locality. One of the books recommended is Can't eat , won't eat by Brenda Legge so I'll maybe do some reading and see what I can learn!


* I have decided to include reference to my son's anger as it is a common problem with many Autistic children which is not being adequately addressed in many area of Britain and often leads to exclusion from schools'