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Understanding The Diagnostics Of Autism And Aspergers Syndrome

13 Jan

Today, when I thought about writing this post I had this strong urge to kick my own arse, as I asked myself the question… “Why haven’t I written this post already”

The Facebook page is now reaching numbers of 5,000 + and although that’s great, it still shows how many more children are being diagnosed as being on the autism spectrum, that or the high numbers of parents seeking a diagnosis and therefore seeking out advice on something they long to understand…. “The Diagnostics of autism”

Subject: Quinn, a boy with autism, and the lin...

Image via Wikipedia

This basically means the different tests and routes undertaken in-order to diagnosis a child as being on the autism spectrum, and it’s this I want to write about here today.

Firstly I should make it crystal clear that there is no set procedure, some places, areas and countries do it differently to another. However, the most important thing to remember before delving in any further is, “One child may be diagnosed in record time, another it may take longer, one child may only see two professionals whereas another…. they may meet hundreds!  

I’m situated in the United Kingdom and my son, now 11 years old, was formally diagnosed in early 2009 as having ‘Asperger’s Syndrome’

One of the common misconceptions made by parents (including myself) is when a child psychologist informs you that your child is indeed on the autism spectrum… you then understandably think you’re child was just diagnosed! Com-on, why the hell wouldn’t you, he just sat there and said it didn’t he? You’re child normally isn’t actually diagnosed and normally it will be a while till they actually are. I remember being told on my first visit, Little man was most likely on the autism spectrum with Aspergers Syndrome being the most appropriate title! Yes, he rambled on about coming back on this date to have this elevation & that observation done, but he said it… I bloody heard him! You’re child isn’t technically diagnosed till them words hit paper, that’s when it matters, that’s when it counts and means anything to schools and services in your local area! I learnt this the hard way, Little man’s mainstream school wrote it off completely, they proceeded to do sod all, that was in-till they saw it there in black & white some two years later! Remember it’s not always so long, actually it should never be this long! We had problems with certain doctors and the schools input didn’t help, we actually had to re-enter the waiting list when the person taking care of Little man’s notes was dismissed, meaning little man was missed completely. Anyhow… My point… when there is still testing to be done and you don’t yet have that paper with the title of any diagnosis, then the likelihood that you actually don’t have one yet… Is, well… quite certain!

Below I’ve posted some of the diagnostic tools you may come across if your child is being assessed for an autism spectrum condition or Aspergers Syndrome.

Aspergers Syndrome Diagnostic Scale (ASDS)

Diagnostic tool used on those between the ages of 5-18 years old as a diagnostic tool. 

Method: Parent/teacher questionnaire made up of 50 questions which are rated and therefore indicate the presence or absence of behaviour mostly associated with Aspergers. The scores give the tester an indication on the probability of a diagnosis of Aspergers syndrome. This is a diagnostic tool, though its rarely used alone when diagnosis a child with Aspergers The above test was one of the tools used for Little man’s diagnosis.

Autism spectrum

Image via Wikipedia

 

Autism Diagnostic Interview Revised (ADIR)

This is a diagnostic tool used on children aged over 2.

 ADIR is a structured 90 minute interview consisting of 93 items spit into three functional domains. The responses given are then coded in 8 areas.

 The test is to look for the early developmental signs of autism spectrum conditions including a child’s Speech and language, the way they communicate and interact, repetitive and stereotyped behaviours and intense interests. (This is another test performed on little man).

Autism Diagnostic Observation Schedule (ADOS) 

This is a diagnostic tool usually used from the ages of 2+ (commonly used on adults as well as children) professional play based observation done on an interactive format (child/clinician) 

 The test is used to assess the child’s social communication & interaction skills, imaginative play or creativity, stereotyped behaviours and restricted interest. It was the ADOS that finally lead to Little man’s formal diagnosis.

English: Subject: Quinn, an ~18 month old boy ...

Image via Wikipedia

 Childhood Autism Rating Scale (CARS) 

A diagnostic tool for children over 2 years.

 The test consists of 15 items rated on a 7 point scale. These items are made up from parental input/questionnaire clinician observations, other related reports and input (educational reports etc)  A wide spectrum of behaviours are assessed including those above and more. The test will establish three possible outcomes… not autistic, mildly/moderately autistic or severely autistic.

Gilliam Autism Rating Scale-Second Edition (GARS-2)

 A diagnostic tool usually used in those between the ages of 3-22 years of age. It consists of 3 sub-scales based on observation of frequency of behaviours such as, stereotype behaviours, interaction and communication, of occurrence and parental interview

Diagnostic Interview for Social and Communication Disorders (DISCO)

A diagnostic tool used for diagnosing children/people of all ages. This is a semi-structured interview schedule lasting some 3 hours with parents, other care givers, which is mainly used in assisting the diagnosis of autism.

An Inspirational Journey.

28 Apr

With so much to say I really don’t know where to start.

So last week I had an idea! Being me I just had to make this idea a reality. Of course this idea was autism related Yes I’m starting to think that maybe Autism is my “Special Interest” How dare I say my son is obsessive. Well what’s this idea, project or even mission if you like? Well I went in search of beautiful images. These beautiful images would be sorted, arranged and placed together to create a collage. Autistic adults & Parents of autistic children from all over the world have sent me their stunning images and gave me permission to create a collage that would need No words for it would tell its own story and by doing so help us raise awareness for Autism Spectrum disorders.

As I sat at my computer working on this very project I came over a little tearful. I don’t think I was sad I just think I was a tad emotional. We  started our journey a few years previous. I sat at the very same computer but this time the mission was somewhat different. I had to educate myself on Autistic spectrum disorders. When It was first suggested that this could be a possible diagnosis for little man I felt lost. Yes I had heard about autism as Little man had a cousin on the spectrum. But I knew little about the condition. Alfie his cousin was at the lower end of the spectrum and Aspergers was considered a more appropriate criteria for a diagnosis for little man. However this took a huge amount of time. It was both tiring and stressful. My heart goes out to every parent going through this process, Stay strong and don’t give up.

Sat at the computer I continue my trip down memory lane. It’s a long lane full of emotional challenges and certain disadvantages that we had to overcome! But there are also many positive event’s that balance it all out. I have learnt to embrace little mans Aspergers instead of fearing it. I don’t want to be a parent who doesn’t understand their child. Ok  there are times it’s impossible to know whats going through his head but I’m sure that’s just boys in general:) But I get knots In my tummy when I think back to all them times he had unwelcome meltdowns and I was at a complete lose to why it was happening and what to do about it. I wanted to scream! And keep screaming. I dare to think how he was feeling. I just wanted to eliminate the triggers for the unwanted and Challenging behaviour, But to do this wouldn’t I need to know what those triggers were? I didn’t have a clue and needed an even bigger clue to know where to start looking. Goggle had become almost a second mum to me. I relied on it so much. Google pointed me in the right direction just as my mother has done many times. I learnt so much and with this I noticed improvements in all areas of Little mans life.  It was evident that a number of problems were caused by his difficulties with his Sensory processing. I can not begin to emphasize how much time and understanding  you will need when dealing with these sensitive problems. It may take time but what else have you got? I had to analyze a number of different  situations for what felt like forever in-order to work out what triggered certain outburst and social awkwardness. We made a reasonably long list of possibles hence the reason I was shocked the school reported no worries or concerns of their own. I remember a certain child Psychologist telling me “His challenging behaviour would  likely become more apparent at school as he grew” I have to say he was right it’s now became very apparent within school! At least I have more confidence  in taking hold of a problem situation as 9 times out of ten I can work out why it’s happening ( See what research ca do for yer ) Avoidance was the key although depending on what the problem was avoidance was not always the best nor even possible action. School was a big No, No But avoiding it was only going to send the AWO knocking at my door gunning me down like a harden criminal. I also assumed that Cognitive abilities were well within the average range. So his learning was fairly good given that he missed a considerable amount of school time. Not only was little man a night owl he also liked to be a naked one. He hated clothing and as soon as he returns home from school off come the clothes and into the toilet he goes. He did this same routine every single weekday and still does ( At least now the clothes go back on afterwards). So I had come to the conclusion that he hated to wear any clothing when taking a poop ( Including socks ) He preferred to be naked in general. He didn’t like wet food touching dry food ( exceptions being daddies pasta and gravy on a roast dinner everything else a no,no ) He hates scrapping  and scratching noises hence the reason for all them meltdowns and boisterous behaviour  every time the task of washing up came around or scraping the fork across your plate in-order to gain the last mouthful off baked beans. That noise sent him loopy yet I just stood looking up asking God why, why, why. He said it makes him feel fuzzy Little man has always been very verbal so It wasn’t that he could not talk to us to let us know he was having difficulty dealing with things! He just expected us to know. I guess at that young age they always do.  But being a child on the spectrum this little blunder may carry on for many years. Sadly for some it’s forever. Little man has come so far and mostly always  informs us if he is stressing because his having a problem with something. If your child has never undergone a problem with sensory sensitivities then it will be pretty hard for you to really relate. Those that have I’m guessing are furiously nodding their heads about know.

Another trigger that came to light was that Little man had certain phobias that made him understandably very anxious. He loves doors but was scared to use public or school toilets for fear the doors may shut and lock him in. He also had this fear in other situations that entailed being behind doors. elevators posed problems as did shops. Yes have you ever been in a shop and it’s due to close? They often lock the door so no other customers can enter. God I remember and will never forget that first and only time that very thing happened. He was aggressive swearing and screaming. He was seen as a spoilt brat. Then we had the emotional overload kick in. He laid on the shop floor holding my feet and asking not to die. He was just 3 at the time. And no he did not grow out of it we have just avoided it ever happening again. He also fears others if they have a certain physical  disability . He will face the wall  and cry. He don’t mean to be nasty he is truly afraid.  Still the on looking eyes don’t make you feel much better.

I’m very proud how far we have come. Little man is having a range of problems within school and lately he has brought some of these behaviors  back home. But we are dealing with them best we can. However exclusions are having a huge negative impacted  on the family and I really want to find a way for this punishment to be avoided. In my opinion it’s only making his routine suffer and his sleep pattern disappear. Apart from the school issues I think we have a much better situation going on. Home life is more settled and we both have a better understanding of one another. We are working on removing his use of swearing if anything his public use at least for now and his aggression towards his poor little sister who is innocent 97% off the time. Hand on heart I think without many of my new friends within this massive autism community I would not be where I am at today. At first it was just us and I really didn’t expect to much in the way of personal support and advice, especially from the internet but how wrong I was. Blogging opened a door for me to explore so many different places that had connections with ASD. Twitter and facebook must be run by aspies 🙂 I wanted to exchange advice and tips with a handful of parents (  the more the better!) Wow I have made contacts reaching well over the thousands. Many are with other parents all going through the same thing all with a story of their own. Behind every blog, profile & tweet there is a connection with autism and that connection bonds us all together in a very strong and uplifting way that I guess only us parents of special needs children would understand. I have Created a Facebook page and group that is open to parents, siblings, and those on the spectrum regardless of age,  gender or race. How quick  the list of members has grown is amazing. And to read comments confirming how beneficial social groups can be to those with autism and their families is a very positive thing that makes me smile. I have been truly inspired by many to go that extra mile when raising awareness for autism. I’m so very lucky to have interviewed people like John Kirton from the documentary Autism x6. John you always offer great advice thank you. Also to be raising awareness along  side advocates such as Anna Kennedy ( advocate and author ) who I’m so lucky to have on my Facebook  friends list 🙂 And other inspirational people I am lucky to have made contact with who are always happy to give advice and I’m sure those in the world of autism would know these great people or a least of  heard of them. Donna Williams, Sally Hugget, ,Polly Tommey ( who is busy with her autism campaign ) are just a few. There are  many more who range from parents, professionals, advocates, educators, Authors, bloggers, autistic individuals and so on.  Wow I really do have many places and people to turn to. Thats just a great reason to smile and cry a happy tear. From Just us to all of us. How liberating. Every time I receive a message or a comment from a parent of a newly diagnosed child I will direct them to this very post to assure them they are not alone. The collage, Group and Facebook page are all a chance for me to give something back.

So now when you look at the images within the collage please see more than just faces! These are the faces of autism. These are the beautiful faces of autism.

The collage filled with beautiful faces of Autism Is now available for viewing on this blog  under the page titled Awareness Collage.


A complete Injustice.

8 Feb

Last night I was on Twitter when I came across a tweet  about a young man called Gomey who had been removed from his home and family by force.

Gomey is 19 years old-young man who has high functioning autism. He lives with his family who like me and many others have to deal with the challenges that autism brings. His family have overcome many issues and were settled into a pretty good routine that left Gomey  feeling happy and settled.

Then things changed. A new social worker visited Gomey for less than an hour and took it apron herself to break up a very happy family She got a court order that stated Gomey was a danger to himself and others. It was even said that Gomey was suicidal. Professionals and family or anybody who knew him knew this wasn’t the case. Gomey was then taken from his home by force by 6 police officers and several social workers and placed in a psychiatric hospital .

despite the doctor at the hospital telling his family that Gomey doesn’t self mutilate and is no danger to others or himself he is still there. It has been said that he has to stay in the hospital for at least 21 days.

This is just my comments please read the full story by visiting Action for Autism. Ad please repost the link for the story on your blogs, websites and social networks. They also have support badges and buttons like the one I have in my sidebar for you to use on your blogs.

As a mother of a child with Asperger’s this story really hit me. What if this was my child. What would I do. We owe it to Gomey, His family and every other person in the world on the spectrum to help this family get their son back to the comfort of his own home.

SPREADING THE WORD

5 Feb

Just a short post everyone.

Wanted you all to know that I have now started a facebook group and Fan page.  Both are doing well and I’m enjoying  raising awareness for ASD. Both are linked to the blog and I have found it a great way to get more parents reading and sharing their story’s on autism.

Everybody is welcome to become a fan or join the group. All that is required is you’re a facebook member. You are all welcome to add the link to your blogs, notes, videos and more. The best part about being a member is that you help me spread the word and raise awareness for Autism & Asperger’s. We owe it to our children to be their voice and speak out for them because who else will ?

If your interested both group and page are called A boy with Asperger’s

If you have trouble with the link then just type A boy with Asperger’s into the search page on facebook.

Updated on the 20th-04-10

Just wanted to update the blog readers on the success of the facebook group & page. It’s going extremely well, They both are a great place to meet and chat with like-minded people all with an interest of autism & Asperger’s. We have fans and members that are autistic, families, friends, and professionals. We have many active and interesting discussions taking place on our group Which has near on 800 members and the fan page has nearly 1300 members. Both the group and page are very active with new wallpost and links coming in daily. If you want to be a part of it then come join us for a very warm and friendly welcome.

MONDAY FINDS ( WEEK 7 )

3 Mar

Oh my what a week’ and it’s only Tuesday. Yes you heard me right! Tuesday! I am indeed posting my Monday finds post a day to late. Please forgive me people for this time I did not forget ( which im pleased to say ) it was more to do with the fact that not only did there not seem to be anoth hours in the day yesterday, it was also that when I returned home yesterday I sat on my bed and that was in deed the very last thing I remember. Sadly it was not the case for big G! little G was sick and kept him up alnight.

Ok so as I have always said better late then never. So here are this weeks Monday find.

Autism London

Providing support for those affected by autism and Aspergers syndrome. They offer a great service with a forum and lots of advice. Check out there site where you will be able to check out some of there activities and events that they hold. You can also check out there fundraising and volunteer page. All this and much more at

http://www.autismlondon.org.uk  Helpline 0845 603 7954

Aspergers support

Aspie community which you can join for free and if you wish you can remain anonymous. Benefits to join are groups, stories, confessions, answers and much, much more.

http://www.experienceproject.com/aspergers

Iautistic

A great find that offers free books, test, games for children on the spectrum, videos and much more.

http://iautistic.com

The national autistic society

Have a look at some of the society’s special events in aid of Nas fundraising events. Your chance to really do your bit and get involved.

http://www,autism.org.uk

The sound of learning

Open house 18th March 2009. Practical solutions to learning difficulties

Sense ability 5th March 2009.

Sensory difficuities associated with autistic spectrum disorder. Dates to be announced.

The sound Learning centre Asperger’s syndrome event. For information on these and upcoming events please visit

http://thesoundlearningcentre.co.uk  Phone +44 (0)208-882-1060

A great social network

12 Jan

If like myself you enjoy social networking and you have a child with autism or Aspergers then your going to love what I’m about to share.
Model me kids is a social network devoted to asd. Once signed up your provided with your own page and URL. Join groups, blog, upload pictures and vids, chat with members and lots more. Model me kids also provided me with some great tools and widgets that you can use on facebook, myspace and more. Do you have a site or blog? If yes you can use these widgets on your site:) since joining I have made contact with a number of nice people and gained some fantastic information.
Model me kids is one of a kind in social networking sites on the net today http://modelmekids.ning.com
If u find link not to work please find this link in my sidebar under links.

Children with Aspergers group

3 Jan

Just wanted to let you all know that i have created a google group (Children with Aspergers)

As this blog is aimed at parents of children with Aspergers i felt it to be a great idea to tie the two together. Everybody has shown great support in the coming together off this blog’ i have received some kind and heart felt comments, reviews and messages.

It would be great to have everybody that enjoys the blog visit and join the group. I’m sure we can all make the group a successes. If we all join together and keep talking Aspergers then we all hold the comfort that at least we are trying to get heard and educate others on the condition.

I HAVE ADDED A BOX LINK FOR THE GROUP IN MY SIDE BAR. YOU CAN SUBSCRIBE VIA THIS LINK. THANKS EVERYONE.

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