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Two and a half year old Freddy is the light of our life, an adorable child, who is constantly making us proud. But every day with Freddy is a challenge as he has an Autistic Spectrum Disorder (ASD) and finds interacting with the world around him a struggle. What follows is a little about the Autistic Spectrum, Freddy, our journey to diagnosis and our hopes for the future.
==What is Autistic Spectrum Disorder?==
Autism is a life-long developmental disorder that affects the way a sufferer communicates, relates to others and sees the world around them. Best described as a spectrum disorder, autism affects each sufferer differently, with some at the higher functioning end of the spectrum able to lead an independent life with others needing a high level of care and support throughout their lives. There are several different labels within the autistic spectrum, including Autism itself, atypical autism, childhood autism, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger's Syndrome, with them all sharing three main areas of difficulty. These main areas are difficulties with Social Communication, Social Interaction and Social Imagination.
While no-one knows exactly what causes Autism, it is thought to be caused by a combination of genetic and environmental factors. In Freddy's case the cause is most probably genetic, as he has an autistic brother and there is a high incidence of autism in our family. There is controversy as to whether there is link between the MMR vaccination and ASD, as the symptoms often first start to reveal themselves at around 18 months of age, which coincides with the injections. Personally I do not see the link, both Freddy and his brother were showing early signs of ASD before they had the MMR and having personal experience of the devastating consequences of Rubella (German Measles) in early pregnancy there was no way that I would not have allowed my children to have the vaccination.
The incidence of Autism is much higher than you would imagine, with up to one in a hundred people living with the condition. If a sibling has an ASD then there is a greater chance of a child having the condition, with the incidence rising to 2-4%. The most common genetic cause of autism is Fragile X and many children with ASD will tested for this condition (we're waiting for Freddy's results now), but in most cases the actual cause is never identified. One thing is for certain, it is neither the sufferer's or there parents' fault and autism knows no social or ethnic boundaries.
For further information on what autism is, I would highly recommend paying a visit to the National Autistic Society's website, where they go into far more detail. http://www.autism.org.uk/ about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx (remove the space for link)
==Freddy and ASD - Our journey, life with and autistic toddler and the road to diagnosis==
As every case of autism is different, I'm now going to focus solely on how it has affected Freddy and our very personal journey.
Freddy was born in April 2010 after a quick labour at 39 weeks, although he had passed meconium prior to my waters being broken and was a little shocked when born, he quickly pinked up and appeared to be doing perfectly well, passing his newborn tests (including hearing) with flying colours. He like-wise passed his 6 week check and appeared to be developing normally, with the exception of struggling to feed adequately from the breast and suffering from reflux. By nine weeks, he was starting to fail to thrive at the breast and moved on to a bottle, which he found far easier and quickly gained weight. In fact he gained weight so quickly that be the time he was seven months, there were concerns that he was a little heavier than he should have been, as he jumped from the 6th to 97th centile (they forgot to measure his height which was also on the 97th centile). At this point he was referred to a consultant paediatrician, which turned out to be a lucky break as his development and subsequent regression were documented from such a young age, rather than us needing to try and get him assessed when his problems first started to become apparent.
At this same age we started to realise that Freddy was a slow developer, he showed no sign that he would be able to sit, even with support and would often slip to one side even in a stroller. He has a significant delay in all his gross motor skills, unable to sit unaided until eleven months, crawling at thirteen months and walking at twenty months. It turns out this was due to a combination of hypermobility (loose joints) and hypotonia (low muscle tone). Hypotonia is actually very common in children with ASD and one of the first signs of what was to come. Up until he was about eighteen months there were very few signs of Freddy's social problems, he would smile, attempt to speak and seemed to love his cuddles. But the signs were there, most babies go through a stage of separation anxiety at about nine months, where they will scream if their parent leaves the room, but Freddy didn't. He also didn't clap hands until he was much older than the norm, and was nearly two the first time he waved. Another big sign was that he would say a word the once and then never say it again, at a year he would say "dain" for train, but he's never said it since. He also did not show any signs of imaginative play, no animal noises, no feeding dolls with a tea set. There was also no interest in anyone unfamiliar or other children.
From around a year old it became obvious that Freddy disliked eye contact and this became most noticeable in photographs. Before this time he would look at the camera and smile, but after this it became almost impossible to take a photo of him looking at the camera. Even when he did seem to be looking at the camera, closer inspection would show his eyes looking elsewhere. Over the next year and a half, it's become more and more obvious that Freddy's social and imaginative skills were not improving and even regressing, with him showing some new unusual behaviours. By his second birthday it had become obvious that Freddy fell within the autistic spectrum, although even now we don't know where.
Any social interaction is very much on Freddy's terms, eye contact is extremely limited, after a lot of work I am able to occasionally hold it for a second if Freddy is interested in the rewards. Freddy's only interest in his own age group is what they might be holding, he will quite happily play in a room with a few children, but should they actually want to interact with him, he becomes distressed and will hide in a corner. I used to take him to dance classes, but he had no interest in joining in and would simply run round the hall like a nutter, putting himself and others in danger. There would also be a lot of tutting from other parents, who didn't realise that he wasn't naughty, but was over-stimulated and his only way of coping was to run around screaming. Freddy doesn't cope very well with crowds, he will become distressed and either withdraw into his shell or run around like a nutter. He also has very sensitive hearing, literally hearing a car turn into the road when no-one else can and climbing to look out of the window, this sensitive hearing means that he finds loud noises uncomfortable.
While his hearing is sensitive his sense of touch is not, he has a very high pain threshold, which means that he doesn't react appropriately when he hurts himself. A good example of this is that he climbed over a safety gate, fell and split his head open. Any other child would have been subdued, but not Freddy, two minutes later he was running around, bouncing off the walls, which wasn't helpful as I had been advised to keep him still. But Freddy is not a child that likes to be held, in fact he hates it and will simply become distressed and try to escape. Any physical affection or contact with Freddy has to be very much on his terms, he will not give you a kiss, but will hold his hand out for you to kiss. He will sit on my knee, but doesn't like to be held too closely and certainly doesn't like to feel restrained. He does, however, love games where he is rocked or swung, the harder the better, we think this is a sensory thing.
Freddy also has absolutely no sense of danger and has poor spatial awareness (where his body is in relation to his surroundings), neither of which are good when you consider he is a climber, that will climb anything and everything and then fall. He also has almost no speech and the few words he does say aren't the most useful (star, Bubbles, car and monkey), which means that he is completely unable to communicate his needs, especially as he doesn't make use of body language either, which means I have to guess what he wants. Freddy is also a child who very much lives in the now, he doesn't understand the concept of waiting and become distressed if something does not happen immediately.
As with most children with ASD, Freddy loves his routine, woe-betide me trying to introduce a new experience or break his mealtime and bedtime routines. Freddy will not accept meals coming late and even though he won't actually go to sleep he will always take himself off to bed at the same time each night. Whenever Freddy has to deal with a change in routine, we will feel the effects for several days afterwards, with him being over-stimulated, distressed and somewhat hyper. When he is like this he seeks stimulation in several ways, including spinning in circles, occasional hand-flapping, running backwards and forwards and head-butting. Of these, the head-butting is probably the most distressing to watch, with him head-butting my stomach and occasionally the floor. But these behaviours do seem to comfort him somewhat, so I try and turn the head-butting onto something soft such as a beanbag.
The behaviour that probably concerns me the most is Freddy's Pica, which is where he eats non-food items, especially when it is combined with his obsession with peeling stickers and paint. Again I believe this is a sensory thing, where he craves the sensation of things in his mouth. He will literally put anything in his mouth and has eaten some strange things including live ladybirds and because of this he needs watching constantly. His real obsession at the moment seems to be peeling paint off of windowsills, doors and even the walls and eating it, which is really not that healthy. This obsession leads to some very nasty nappies, which is made worse by the fact that he is not only nowhere nearly ready for toilet training, but doesn't seem to be aware that he has a wet or dirty nappy. The second hardest aspect of Freddy's ASD to deal with, has to be sleep, or more exactly the lack of sleep. Although Freddy will take himself off to bed at the same time every night, he will not sleep and is often still awake at midnight. He also suffers from night terrors, where he will wake screaming at 2am and need comforting, which is extremely difficult with a child who dislikes close physical contact.
Most people on the autistic spectrum will have some kind of obsession, for many it is lining things up, but Freddy is not really into lining things (other than that the console games all have to be in order). Freddy's obsessions are peeling stickers (and paint), where if he finds a sticker he has to peel it off, no matter what it is attached to, and the buttons on electronic toys. He is absolutely fantastic with electronic toys and gadgets, able to work them out far quicker than I can. He also absolutely adores cars (the real thing), climbing onto his chair to watch them out of the window and stopping dead when walking if a car goes past so he can watch it.
While some people on the spectrum do not have any associated disorders, others do and Freddy is among them. Freddy also has a severe global developmental delay, learning difficulties and is hyperactive. This has made getting a final diagnosis a little harder as these other problems can present with some of the same issues. In Freddy's case he has been assessed by his consultant and a speech therapist so far, and the current standing is probable ASD. But the consultant has said that it is ASD, he will be having other assessments to see where on the spectrum he is and if were not for his learning difficulties he would have a firm diagnosis now, but she seems to be covering her back. We now realise how incredibly lucky we were that Freddy was referred to a consultant at such a young age, as for many getting that diagnosis is a struggle and the earlier the intervention the more positive the outlook. Had Freddy not been already seeing a consultant, then my first port of call would have been the health visitor, followed by the GP and then if necessary education department. There is no definitive test for ASD, diagnosis is made after observation of the child, but there are some check-lists that professionals can use that screen for the characteristics.
Although there is no cure for ASD, children do progress and the earlier the intervention the greater the progression. I do not know what the future holds for Freddy, but my dream is for him to be as independent as possible and to live a full and happy life. I'm so grateful that his problems have been picked up early and that he is starting to get the help he needs now. On the advice of the speech therapist we are starting to use pictures and signing to him him communicate, and both the speech therapist and consultant are pushing for him to have individual help when he starts pre-school in just over a week.
The one thing that I have learnt is that as a parent you have to fight for your child in all things, whether it be the therapy they need, they help in school or Disability living Allowance. You also have to accept help when needed, I found it hard to start Freddy's claim for DLA, but it is money he is entitled to, and money that allows me to spend extra buying him toys that will survive his destructive play while still aiding his development. I haven't even thought about schooling for Freddy beyond pre-school, but I ready to fight for whatever option I feel is in his best interests, whether that be mainstream with support or special school.
Life with Freddy can be very challenging and extremely hard work, but it is also very rewarding. He may be slower to reach those milestones and we may have a few meltdowns on the way, but when he does the sense of pride is that much greater. I'm still waiting for the day that he consistently calls me Mum, but when it comes I just know that I will burst with pride.
If you recognise anything about Freddy in your child, then I can't stress enough that you should push to get the help your child needs. Life with an autistic child may not be what you were expecting when your child was born, but it won't change how much you love your child. It will just be different and part of the process of coming to terms with autism is to grieve the child that could have been, so you can embrace the child that is. Freddy simply would not be Freddy without the ASD and now I would not have him any other way. I'm going to finish with this piece by Emily Perl Kingsley, as I really couldn't say it any better myself.
==Welcome To Holland (Emily Perl Kingsley)==
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I am going to open my review with my very strong opinion that WE ARE ALL ON THE AUTISTIC SPECTRUM!
This is a topic close to my heart. I have a child with learning and behavioural difficulties, many of which reflect ASD Autistic Spectrum Disorder. My daughter is a patient at the local children's centre that specialise in children with special needs. My daughter has been given a diagnosis of ADHD but they also want to look into ASD with her. I have chosen not to go down this route at the moment, not because I don't want my daughter to be labelled as Autistic (I have no issues with labels at all) but because I personally don't want to sit there again, talking for an hour or so about all my daughters negative point's. I personally find this really depressing and deflating, and find that this can impact my home life for the next few weeks or so. This impact may well be because I am a single parent and carry these thoughts worries and concerns completely alone. My daughter is currently receiving help at her school that suits her individual learning needs, so that is why I don't currently feel the need to focus on my daughters negatives and invite depression into my life until it is necessary (such as when she is about to start high school). To some this may sound very selfish, and I respect that opinion, however, my daughter has many, many positive attributes, these go unrecognised by doctor's, they don't want to hear that side.
Now to get back on track.
I am currently in my 3rd year of working as a 1:1 teaching assistant with children on the spectrum, I am working with my second pupil and we have several pupils diagnosed with being on "the spectrum" within our school, but several others who could well be on "the spectrum".
ASD is such an interesting and deep condition ranging from the very minor cases to severe cases. The Spectrum is so broad.
So what is autism?
It's basically means that your brain is wired differently. Your perception can be very different, very literal. For example the expression: "Pull your socks up" can mean come on get with it/ sort yourself out/hurry up, to you or I, to a child on the spectrum they can intemperate it as quite literally, pull your socks up. It is common for autistic children to find facial expressions confusing and not be able to recognise sadness, or anger in someones face. Another typical action can be special awareness, unable to respect other people's space and not being able to understand why some touching can be invading and unacceptable.
Many children on the spectrum can suffer with sensory issues, such as: noise sensitive, light sensitive or even touch sensitive. They can find event's like having hair cut or even brushed, feet measuring, teeth brushing, hair washing very distressing. It can be really difficult to overcome these situations that unfortunately do have to be faced.
I have been fortunate through my school to have been able to receive support from C.A.T. County Autism Team. They have been brilliant for me as a teaching assistant and have taught me the value of visual time tables, and social stories, amongst many other useful info.
Visual timetables - Very basic and can sound in affective, but try it before you decide, you can often be pleasantly surprised. Visual time table is quite simply a timetable of that day's routine, you can use words or pictures (depending on if your child can read or not) set your time table at vertically or horizontally, and talk through the event's of the day so your child knows what to expect. Some ASD children really find it hard to mentally predict, and don't like change.
A useful site for finding pictures to use for visual timetables is www.sparklebox.co.uk, this site is free to join and has great general resources also.
I mentioned Social Stories before, these can be a complete godsend!.
A social story is probably easier to write than explain, so here is an example of a social story about going to the hairdressers.
My name is........
I am ......years old
I have long/short brown hair,
My hair grows a tiny bit every day
Sometimes my hair gets too long and when it gets to long, it can look messy, get in my eyes or can be hard to brush.
When my hair gets too long I need to get it cut, this means I need to go to the hairdressers. I don't like going to the hairdressers or getting my hair cut.
The hairdresser has to brush my hair and she will brush my hair as careful as possibly, I can help her by keeping really still this can stop it hurting when I get my hair brushed.
My hair being cut doesn't hurt, I can sometimes here the scissors cutting my hair but I don't feel any pain so I don't really need to worry about having my hair cut. When my hair is cut it will keep growing and in a few months time I will need to have my hair cut again.
I don't like having my hair cut but it is important for me to have my hair cut. I will try to sit very still when I have my hair cut and brushed.
Everybody needs to get their hair cut sometimes.
It's important to let the child help your write a social story it helps them to connect to the story, print it off and they can read it as and when they want to, also read it before your trip to the hairdresser.
Please contact me direct if you would like further help and advice on social stories, I have written quite a few successful ones now, on farting, death, interrupting, playground play and strangers, as well as others.
I mentioned earlier that I thought we were all on the spectrum.
Do you have to get dressed in a certain order?
Do you have to lay the table before you go to bed?
Does everything have to be lined up exactly right?
Do you always like to sit in the same seat (on the bus, in the staff room)?
Do you always used the same toilet cubicle at work?
Do you have to write lists for everything?
Do you have OCD?
Are You dyslexic?
Do you have a certain way of eating your roast ( meat first then veg)
Are you "normal"
When you start looking into the very broad ASD you will find at least one attribute that you recognise in yourself.
Sorry if I have rambled, I am extremely passionate about Autism.
Autism is truly fascinating, it is built of so many layers.
Autism isn't only what Dustin Hoffman represents in Rain Man!
Further information taken from Bupa.
Autistic spectrum disorders (ASDs)
Published by Bupa's health information team, August 2007.
This factsheet is for people who would like information about autism and other autistic spectrum disorders.
Children with an autistic spectrum disorder (ASD) don't develop the social and language skills that other children do. As a result of this, they find relating to other people difficult. They may also have unusual behaviours and learning difficulties.
What is the autistic spectrum? Symptoms Causes Diagnosis Therapies and interventions Help and support Further information Questions and answers Related topics Sources What is the autistic spectrum?
Autism is a range, or spectrum, of disorders that affect individuals to varying degrees. A child can have their own combination of difficulties, putting them somewhere on what is called the autistic spectrum. Some children with autism may have learning difficulties and very limited speech and communication. Other children with a milder form of autism, called Asperger's syndrome, may have a good vocabulary but still have difficulty with communication.
According to the National Austistic Society, over 500,000 people in the UK have an ASD. A study published in 2006 has shown that as many as one in 100 children may have an ASD. It's four times more common in boys than girls.
Children with an ASD have three main types of problems. These are to do with their:
communication social development interests and behaviour (social imagination) If you notice signs of ASD in your child, you should see your health visitor or GP.
Children with ASDs may not develop the usual speech or non-verbal (eg pointing) skills of other children of the same age. They may also have trouble with understanding meaning in spoken or written language. Children with severe autism may never speak at all but may be helped to communicate in other ways (eg signing or using picture symbols).
These communication problems may show up as:
not babbling or pointing by the age of one not responding to their name not learning two words by the age of two in older children, unusual use of language and difficulty starting or keeping up conversations repeating words they have heard over and over again Social development
Children with an ASD may have difficulty in making friends and getting on well with their peers. They may:
seem very independent as toddlers and aloof when they get older have poor eye contact not seek affection in the usual way and resist being cuddled or kissed be unable to play with other children and have difficulty making friends seem to be "in a world of their own" not understand other people's thoughts and emotions find it difficult to accept simple social rules, which can cause problems at school Children with an ASD can be affectionate, but may not be able to respond to another person's need for affection.
Behaviour and interests
Children with an ASD may show very little or no interest in play that involves pretending. Instead they may be overly interested in repetitive activities, such as lining up their toys or watching the washing machine drum rotate. Children with an ASD may also:
learn to sit up or walk later than most children be oversensitive to noise or to touch (for instance, finding the vacuum cleaner or hairdryer deafening) have odd mannerisms such as rocking back and forth, hand flapping, walking on tip toes or head banging some may be clumsy and so struggle with physical activity Older children and adolescents may develop obsessions such as an excessive interest in timetables or lists, and in storing up trivial facts.
Intelligence and autism
Around three-quarters of people with an ASD have a learning disability. Some people who have Asperger's syndrome may have normal or high intelligence but struggle with social skills. Outstanding abilities with maths, music or drawing are uncommon.
Experts think ASDs are caused by differences in the way the brain develops before, during or soon after birth. It is also though that the genes a child inherits from their parents have an important role in determining whether they will have autism. However, the exact cause is unknown and it's probably due to a combination of different factors. There is a lot of ongoing research looking into the causes of ASD.
Autism and MMR
There have been media reports about a possible link between autism and the MMR (measles, mumps and rubella) vaccine. However, this is an unproven link and there is no scientific evidence to support it. There is plenty of evidence to support the safety of the MMR vaccine.
Autism is usually diagnosed in childhood, when a parent raises a concern about their child with their GP or health visitor. A developmental paediatrician - a doctor specialising in child development - can usually diagnose autism in children between the ages of two and three.
A milder form of ASD, such as Asperger's syndrome, is often not noticed until the child starts school because many aspects of their development are normal. At school their poor social skills are more noticeable and they may show challenging behaviour.
There is no medical test (eg blood test or brain scan) for ASDs. However tests may be carried out to exclude other conditions (eg hearing problems). The diagnosis is then based on observing the communication, behaviour and development of the child. Professionals will involve you in the assessment to find out about your child's development.
If autism is suspected, the child may be assessed at a child development centre to identify his or her specific needs. The child may see a range of professionals including a consultant developmental paediatrician, a child psychiatrist (doctor specialising in children's mental health), speech therapist, occupational therapist, psychologist, and an educational expert such as a specialist teacher or educational psychologist.
Each child should have an appointed key worker, such as a health visitor or school nurse, who knows about the assessment process and acts as a single point of contact.
Therapies and interventions
There are no known cures for autism, but children can be helped in many ways. Interventions for ASD include special education, behavioural training, social skills training and, in some cases, medicines.
All children with an ASD need some special educational support. This may be in a special school, or depending on the child's needs, he or she may go to a mainstream school with extra individual help. In general, autistic children do better if classroom activities are very structured.
One therapy may work for one child but not for another, as all children have different levels of needs and abilities.
These may be provided by a clinical psychologist or trained therapist and can help a family cope with any behavioural problems associated with autism. This generally involves rewarding good behaviour with praise but having a consistent and structured way of dealing with challenging or harmful behaviour. Similar methods may be used at school where the child can be taught improved ways to express themselves.
Sometimes medication is used to reduce specific symptoms. For example, some medicines can be used in the short term to help relieve agitation, obsessional or hyperactive behaviour. However, these can have side-effects if used for a long time. For example, drugs to reduce hyperactivity can increase repetitive and obsessional behaviour. Medication should always be used together with behavioural therapies.
There are various approaches available to help with communication and learning; these include the following.
Intensive pre-school training. A type of therapy called applied behaviour analysis (eg Lovaas therapy). This is a home-based one to one therapy delivered by professionals (eg psychologists) and parents, who have been trained in the method. It involves a system of rewards for acceptable behaviours. This is an intensive therapy with 35 to 40 hours per week of structured contact with the child. A system based on using picture symbols (eg Picture Exchange Communication System, or PECS for short). Although many parents find these approaches very helpful, and many experts believe offering early therapy for a child with autism is beneficial, there is only limited formal evidence (from research studies) that they are effective. Also, they may not be available where you live.
Help and support
Parents and carers need information, help and support. This should be provided by the health professionals involved in your child's care, but further advice is available from charities such as the National Autistic Society (see Further information).
Respite breaks give you a chance to rest while somebody else looks after your child. They may be provided by social services. Some families are also entitled to benefits such as disability living allowance to help cover the extra expenses involved in caring for their child.
The National Autistic Society
0845 070 4004
www.autism.org.uk Contact a family
0808 808 3555
This was originally on CIAO reviewing the book titled below. I'm going to keep it as a book review despite the book not appearing on Dooyoo because anyone who finds themself in the same position as me will benefit from this book.
Autism Spectrum Disorders - Chantal Sicile-Kira
Just as an introduction, I am a special needs teacher and I specialise in teaching sport across the ages of 11 to 16. As part of my job, I deal with a number of children from different backgrounds and conditions, from physical disabilities through to behavioural problems. In particular our school has a dedicated ASD (Autistic Spectrum Disorder) unit and I work closely with the ASD teachers to provide the best opportunities for the kids in those classes. Its therefore with a huge amount of passion that I can review the above mentioned book and perhaps give everyone a small insight into the world of Autism.
The author of the book Chantel Sicile-Kira has worked within the field of Autism for over 20 years, both as a parent and in her professional capacity. Without wanting to become to biographical, her first experiences within the field of autism was at Fairview State Hospital, California, teaching self-help and community living skills to severely developmentally disabled and autistic adolescents in preparation for their de-institutionalization. Unknown to her at the time, this experience shaped her career, in particular her son was diagnosed with autism when they were living in Paris. It was fair to say that back then (1990's) treatments/programmes for autism were hard to find, so they moved to England and enrolled on a home programme which would help analyse his behaviour.
It was these experiences that propelled Chantal towards writing and speaking to people about autism. To list all of the work she has achieved would take up the majority of the review so instead I'll direct you to her website if you would like more information (chantelsicile-Kira.com) . I would add at this point that her work is wonderful, truly philanthropic and a huge contribution to a condition that is largely misunderstood.
The strength of the book is really its simplicity. I was worried when I first thought about buying a book regarding autism, because I immediately thought it would be heavy going and I would struggle to get anything out of it. I couldn't have been more wrong.
The book itself is broken down in to easy subject areas, looking at the key questions surrounding the topic.
The causes of autism spectrum disorders (ASDs)
The different categories of ASDs
Why people with an ASD act the way they do
An analysis of the different treatments, therapies and dietary interventions currently available
Coping strategies and practical tips for families
Educational needs and programs
Adolescence and ASDs
Teaching strategies and resources for educators and other professionals
Work and college for young adults
Adults life with an ASD
Advocating for a person with an ASD
Planning for the future
The book is written with a free flowing colloquial style which makes it more like reading an advise pamphlet rather than a scientific journal. I like this because the subject area is already shrouded with enough misconception and ambiguity, let alone the writing style adding to the issue. However this does not detract from the value of the book or its insightful analysis of the topic area. It is detailed and thorough in its approach, but maintains a easy reading style throughout.
I also love the way that the book is punctuated with real life examples of living with autism. The diagnosis of autism is really still in its elementary stages compared to the diagnosis of other conditions, therefore by sharing experiences from both parents of autistic children, professionals and those living with autism, you get a well rounded, analytical and insightful appraisal. The book is not just about understanding autism, but also how to cope with it and develope planning strategies.
MY EXPERIENCES WITH AUTISM
Just as a foreword, the following is a completely honest account of how I felt when I first met the kids from the ASD unit at my school. This is not meant to offend anyone as I hope to explore the issues of my initial ignorance of the condition, to aid the understanding of others. Having now had 2 years experience, I can look back at all the errors I made, but feel it is relevant to highlight them as many people act the same way as I did through lack of understanding when they first meet someone with autism.
I joined my school 2 years ago. I was new to teaching and I was certainly new to special education. I did however have bags of enthusiasm and an open mind.....I wasn't sure what to expect. I was given some advise regarding autism, but in truth this made me more nervous rather than more confident (which I think was the intention!)
Well my first lesson with the ASD class was terrifying. I didn't know how I was supposed to act and I wasn't even sure how the kids would react to me. My first analysis was that some of the kids seemed to be more heavily affected than others. By this I mean that some of the kids appeared as totally "normal" to me (I hate this expression but please bare with me) and others showed symptoms more typical to what I was expecting (impaired speech, lower social interaction).
It was a sports class and we were playing a calm game called "botcha" (basically throwing balls into hoops on the ground). However being my first day and wanting to make a good impression, I tried to inject a bit of excitement into the game by commentating on their efforts. This was a big mistake.
Some of the kids loved it as I did my best John Motson impression, getting to fever pitch as the ball would roll into the hoop. Looking around however, I noticed one or two of the kids sitting there silently with their hands over their ears. Infact one child on the end (and closest to me) had inverted their jumper right over their head in an attempt to "block out" the noise I was creating.
This mismatch of behaviour perhaps confused me the most. Firstly, my behaviour (In this case the noise I was creating) seemed fine to some of the kids, but abhorrent to others. Also the reactions to the noise created completely different responses. I knew at this point, I was going to find out more.
As the game progressed, other behaviours started being exhibited. For instance, I could never change the order at which they took their throws. Quite literally some of the kids refused point blank to have their turn because it was "XXXX go first".
I was also noticing that some children had funny "traits" things that they would keep doing, like blowing three times before every throw or touching the bench or saying the same phrase, almost like a compulsion, they had to do it or it would end in failure. I found that a couple of the kids would mirror what I was doing or saying, for instance I would say it was "XXXXXX go next" and I would get a chorus of "XXXXX go next" from around the room.
At the end of the lesson, there were still strange events taking place. One of the children refused to get ready because they couldn't find their socks. "Don't worry I said, put your other clothes on and we'll find them in a minute". He just sat there in his gym kit for the next ten minutes until I was told that unless he puts his clothes on in the correct order, he won't get ready.
I could see I was going to need some help because unlike many conditions, Autism seemed to have no boundries or patterns........the kids all reacted differently. They each had a different stimulus to set off their autism, and they each displayed it in completely different ways.
It was at this point that I decided to read up on the subject of autism and Chantel Sicile-Kira book really has had an outstanding impact on the way that I teach. It helped answer all the questions I had regarding autism. What is it? How is it caused? Why do autistic people act like they do? How can I manage their behaviour. It also helped me challenge my intial beliefs regarding autism and gave me the understanding I needed to create the best relationships with the kids I teach.
This book is invaluable if you are new to the world of Autism. An excellent read which changed the way they I view autistic people completely.
I hope that helps,
I dont know where to start with this one. Its a painful and long hard trek that takes me back to the birth of my little autistic boy 39 years ago. I am now a pensioner and hope you will forgive an odd blip or two over the years where I may have forgotten some dates etc. All I can do is relate my story to best of my ability. Here goes!
For the sake of anonymity I will call my wonderful son Stefan. Obviously this is not his real name which I feel for his sake should remain unknown. One warm Saturday evening mid September in l970 my little boy wonder was born in the maternity wing of Slough General Hospital. He was my second baby ( the first also being a little boy)
At the last doctors appointment (no luxury of a scan in those days) I was informed that I would be admitted to hospital to try to turn the baby round as he was lying in a breach position. An extremely old gentleman doctor appeared when I had been admitted and said he had been called out of retirement while the usual doctor was off sick. He pushed and shoved my tender tummy (bearing in mind that my little breach baby had kicked my lower abdomen so much that it was very tender). I was given a knock out injection and some procedure or other was carried out to turn him round.
On awakening I was informed that the baby would not turn and I would have to have a breach birth. To cut a long story short, my labour was induced and I started to bear down. At this point I was wheeled down to theatre for my delivery. ( I was afterwards informed by a little Chinese nurse that one leg was already born at this point in time), and they made me SIT IN A WHEELCHAIR all the way there.
The elderly doctor then pushed my baby right back inside me which caused me to have a massive contraction at which this doctor shouted "dont push you bloody stupid woman!!!!" Yes! That is exactly what he said, forgive my french. Eventually after much pain, and no form of painkiller my beautiful little son arrived, very disgruntled and affronted at his hasty journey into the world.
Now in those days husbands in the delivery room were unheard of and therefore they could treat you however they liked with no-one to witness the abuse. Not that my ex husband would have been any good (we were married then!) . He was down at the nearest pub celebrating whatever I produced and eyeing up the local barmaid with whom I later found he was having a full blown affair.
This is how my little Stefan was hustled into the world. No dimmed lights, calming music, kind voices. Just the bright theatre lights and the booming voice of this gereatric doctor.
I often wonder if Autism is caused partly by something untoward happening at the birth!
At three years old he was not doing what my friends babies were.
He couldnt be bothered to talk. Was difficult to control and showed no love back for all the love lavished on him by me. I felt I spent my young life picking him up of the floor after one of his massive temper tantrums then having to explain his handicap to the people who were tut tutting all around us.
Dont get me wrong, he is the most charming and handsome person, with the manners of an angel when hes happy, but let one thing be wrong, the tone of someones voice, the high pitched scream of a child and hes a raging bull who injures himself (never anyone else). He never ever hurt anyone else in his life.
Id better finish soon as I will run out of page space. He was diagnosed autistic at 5 years old and went to a special school locally which was amazing. Then on to sheltered work. Now he gardens at a stately home with a team of his friends with similar disabilities to his own.
He lives independenty with one carer as I became unable to care for him on my own due to the fact that I had a heart attach and heart surgery. He has his own little house (purchased via the services ) and is reasonably happy. ~That is as happy as an autistic person can be, in this sometimes unthinking and cruel world. I could go on but better not. Suffice to say we love him to bits, and we think he loves us too!
Autism like many other people my only knowledge of this disorder was the film Rain man. , which portrays a serverly autistic man who is also a savant. whist this film helped to inform the public about autism it unfortunatley gave out the idea that all Autistic people had savant skills , such as a computer like memory for dates figures and facts . when in actual fact savants are very rare.
So when i had my son eleven years ago, the thought that he could have autism never crossed my mind. When he had his two year assessment and was well below the expected level of development worries started to set in .
He was referred for checks on his sight , hearing and to see the speech therapist and peadiatrican . Whilst his hearing was fine and he needed glasses i was told there was a shortage of speech therapists so was put on a long long list. In the meantime we saw the paedeatricain who said he had GLOBAL DEVELOPMENT DELAY , which to me meant oh he's delayed in his development he'll catch up.
How niave i was , he didnt catch up because in fact he was Autistic , i found this out when at last the speech therapy appointment came up she did an assessment and said i think your childs Autistic. Soon after a phychologist confirmed this
Looking back he was displaying classic symptom hand flapping , avoiding eye contact , disliking loud noises , liking routine , his behavior really showed it self in full when he attended part time nursery and could not cope with the noise, amount of people and the envoronment , this resulted in him being given a one to one support to help him . He didnt stay ther long and soon after started attending a Autistic unit which suited him perfectly high levels of steff and only a hand full of staff.
I didnt realise that Autism was a spectrum disorder ranging from the most serverly affected with no speech and needing lots of personal care, to the other end of the spectrum where people are very verbal and can appear normal but have lots of trouble adjusting to changes in their routine, and coping with busy noisy places.
What all Autistic people have in common is what the phsycologist said is called the triad of impairment which is made up of difficuties with - social skills ,
most also suffer sensory overload ,this is why you very often see an autistic person having a "meltdown" in a public place this is because there is literally an overload of colours ,noises smells they cant process all this information like the rest of us and because they can lack the verbal skills to express their anxiety to their environment they can start shouting throwing themseves on the floor and getting agressive to those around them.
Ive been in these circumstances very often with my son and sadly members of the public think he's spoilt naughty etc which is due to their lack of knowledge of autism , i would only wish instead of glaring tutting or gossiping about my son and others with autism ,dont assume theres a naughty child i wish theyd go about their own bussiness and leave the parent to deal /remove them from the source of stress instead of adding to the parent/childs stress by turning them into a side show
If only the media put as much energy into informing the public about mental health disorders instead of the endless conveyorbelt of reality shows we might have a more well informed tolerant society
Ive become a stronger person through my experiences raising my son and wouldnt change him for the world he is lovely he's towords the milder end of autism and attends a special school daily and is progressing well
whilst theirs no cure for Autism with the right intervention and atitude of those around you it can be made as tolerable as possible
My main advice to anyone worried about their childs development trust your own instincts ,dont let people tell you your an over anxious mother no one knows you child as well as you , the problem is many health proffessionals do not know much abourt Autism either
Autistic people like routine routine routine as much as possible as it keeps their anxiety levels low ,as once heightened thats when themeltdowns happen.whilst this isnt always possible keeping to routine helpskeep them calm.
Ive had to change my life considerably to minimise the stress for both of us in our day to day life thanks for reading if youve got this far
When I was a child I had no idea what autism was - it existed of course, but children back then were transported to special school in their "special" bus and we never mixed with them.
I first became aware of it when my nephew was diagnosed at the age of 8 with Aspergers Syndrome. I live some distance away from him and I recall seeing him when he was 4 and it was patently obvious to me that he had issues of some kind - he refused to look me in the eye, wasn't particularly communicative and frequently asked me to "shh" by putting his finger over his mouth.
I remember mentioning to my mother that there was clearly something wrong, but my mother, in her usual ostrich-like fashion, poo-pooed the idea and refused to mention my concerns to my brother. I did, however, mention it to my husband and he suggested it could be autism - he was aware of the disorder from knowing a family with an autistic child in his youth.
When I had our daughter, the MMR and autism debate was in full flow and I had read up on Aspergers and autism at the time - mindful of the fact my nephew had it I was hoping and praying she wouldn't be affected.
However by the time she was about 18 months old it became obvious to me that she wasn't developing as she should. She was a late walker, and she refused to play with her toys in an imaginative manner - she would merely line them up neatly and then knock them over. This, to her, was "play". She would only watch the Teletubbies on TV - and even then she preferred the same episodes on video over and over again.
She refused to toilet train, didn't like crowds or loud music, and preferred her own company to that of anyone else. She was also completely non-verbal. It became glaringly obvious to me that she most likely was autistic, but I then had to endure some hostility within the NHS in order to get a diagnosis.
There is a widely held belief that if autism is diagnosed early, and therapy is offered promptly, that the effects of this "early intervention" can lessen the effect of autism. So with this in mind, I was determined to try to get a diagnosis as soon as possible.
Unfortunately I came up against a paediatrician who didn't believe in early intervention and who was extremely reluctant to diagnose my daughter. She was insistent that my daughter had hearing issues, and therefore set her up for hearing tests. Now these tests were conducted using old and heavy instruments and my daughter refused point blank to have the earpieces put in her ears. The paediatrician ended up cancelling the tests in frustration, and referred my daughter to a prominent audiologist at St Mary's Hospital in London instead.
This was the breakthrough we needed - the audiologist spotted almost immediately the fact my daughter had no hearing problems whatsoever - she was, in fact, autistic. Once she made this declaration, the paediatrician had to bow to her greater knowledge and therefore a couple of months later, just before my daughter turned 3, she was formally diagnosed with autism.
Autism affects people in many different ways - which is why you will frequently hear it described as the "Autistic Spectrum". Aspergers Syndrome is at the high functioning end of the spectrum - at the lower end people will need full-time care for all their lives. I have encountered people at all ends of the spectrum, and also children who seem to have been labelled autistic when they weren't - they were just sadly deeply mentally disabled and needed constant supervision and care.
Autism means you view the world differently to those around you. You tend to take literally things people say - idioms, for example, can be akin to a foreign language. Body language and facial expressions mean nothing to you. It is a neurological disorder and there is no known cure, and its unknown what causes it.
I already mentioned the MMR debate and I had taken the precaution of ensuring my daughter had single vaccines rather than the triple jab. In my case however it made absolutely no difference and it strengthened my belief that autism is caused by genetic or environmental factors, rather than a reaction to any vaccine. I do, however, concede that lead contained within vaccines may well be a factor in autism. Happily this practice has now been abandoned.
One of the reasons people linked MMR to autism is the timing in which a child "switches off" with the disorder. It tends to happen around the 18 month to 2 year mark, which is exactly the same time MMR is administered. Less well known however is the fact sometimes children regress at around age 7 and a lot of progress made becomes lost.
My daughter started at a special school specifically for children on the autistic spectrum when she was 4 and she thrived in the environment. I was also fortunate enough to get her some psychotherapy through the NHS which was exceptionally helpful at getting her to understand some of her basic emotions and also made her more tactile as a person.
We also paid to send to her to a wonderful establishment in London called the Speech, Language & Hearing Centre, which enabled her to get Occupational Therapy and Speech Therapy.
As a result, not long after her 5th birthday she finally started to speak and she became fully toilet trained.
There is no cure for autism - but children do develop. There is a school of thought in the US, perpetrated in the media by Jenny McCarthy regarding her own son, that the condition can be "cured" - but its something I strongly disagree with.
Children with autism will develop and will outgrow some behaviours. For example, my daughter used to "stim" a lot - for her it was flapping her arms, for others its walking on tiptoes, headbanging or punching. She stopped doing it by the time she was 7 - by that time she had outgrown any usefulness she derived from it.
People who claim their children have been "cured" tend to cite the fact their children are toilet trained, can speak, can read or write and have stopped "stimming" as proof the disorder has vanished.
This is extremely disingenuous - my daughter is now 12 and attends a mainstream school and has been able to read and write since around the age of 6. However she is still autistic - she is incredibly immature for her age, has only one friend, is still happiest on her own, dislikes social situations and meeting new people and still finds basic eye contact extremely difficult. She is extremely impatient, very blunt with no understanding of the intricacies of tact, and still throws tantrums that would put a 2 year old to shame.
So I could never say she has been "cured" - she has merely developed thanks to the care and guidance of many professionals over the years, and the fact she has had the good fortune to be taught by some outstanding people.
It can be difficult to access these professionals but my advice is to persevere for the sake of your child. I learned this because my nephew's late diagnosis completely blighted his education and formative years so if you suspect your child has autism, push for a diagnosis as soon as possible.
Autism isn't a death sentence - it just means your child's life is going to be different than you had hoped for. That in itself isn't the end of the world and despite the challenges I face bringing up my daughter I love her as she is and couldn't imagine her any other way. I know I will continue to face challenges with her as she gets older but the more people learn about the disorder and mix with those who are affected by it, I hope that people will become more tolerant of it, and of her.
" I can remember the frustration on not being able to talk I knew what I wanted to say but I could not get the words out so I would just scream":- Temple Grandin
What is Autism?
Autism is not a disease, it's not contagious Autism is a lifelong developmental disability. Autism affects every one differently, some people can function daily as well as you or I. For others each day is an on going battle, and where in their mind is a constant battle to make sense of every day things.
There are many ways to describe how Autism effects the brain this is how I explained it to my daughter. Imagine your brain is made up of lots of boxes, each box has a very important job, each has to communicate with each other and the box at the top is the boss and everyone needs to keep in touch with him. They keep in touch using telephones, in our brain the telephone lines are connected so all the box's can keep in touch with each other and the boss. With Autism they have all the boxes but the telephone lines are not connected properly, so you have some boxes that can communicate with each other and the boss and some box's that have multiple telephone lines connected to the boss but none to any other boxes. So some parts of the brain get lots of communication and other none and others get far too much communication and get in a muddle.
I am not an expert in Autism just a parent of an Autistic Child so I can only speak about what my child's Autism has taught me.
Some Autistic people can have sensory over loads which can result in flapping or rocking as they become anxious which, society finds difficult in accepting. However most people do similar things i.e. how many times have you been slightly stressed or agitated and tapped the glass you are drinking from. Or had a pen you your hand and constantly click it , or may be tapped a pencil on the table or twiddled you thumbs?? These actions go unnoticed and are classed as socially acceptable.
Here I will try and describe it in my daughter's world. We are sitting in a coffee shop, there are many noises going on, the door opening & closing, the till machine. Other people moving? Talking, the noise of the coffee machine, cars outside music playing in the background. I have the ability to ignore the noses I don't need and concentrate on the conversation I am having. My daughter does not have that ability, she hears all the noses and there for has a sensory over load which in turn cause s her to become anxious and she will start rocking backwards and forwards with her fingers in her ears and she starts humming, this is not socially acceptable to most people.
If she become too anxious the rocking can be replaced by screaming and throwing her self on the floor.
Some people affected by Autism can have real difficulties understanding numbers and speech but may be great at art. Other may not be able to carry out daily life skills but be great at maths,
Persistent fixation on parts of objects is common with autism, my daughter becomes obsessed with various things which can last for a few day. At present it is Mary Poppins the scene in the bank all we hear is "STOP ALL PAYMENTS GIVE ME BACK MY MONEY" and she rewinds the DVD over and over, or as in her fixation on flushing the toilet can last for years
Boys are 4 times more likely to be affected than girls
People with Autism find it hard to make friends but because of their disability find it hard to do so
Autism has nothing
to do with the way parents bring up their children
With the correct education & support people with autism can be helped to reach their full potential
It is estimated that 1 in 100 children are affected by Autism
I hope I have given you an small insight to Autism