Newest Review: ... the very broad ASD you will find at least one attribute that you recognise in yourself. Sorry if I have rambled, I am extremely passionat... more
He's not broken, just different
Member Name: sandemp
Date: 02/09/12, updated on 02/09/12 (98 review reads)
Disadvantages: Challenging, exhausting, other people's attitudes
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-intro duction/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.
Summary: Autism is part of who Freddy is