Channel 4 (UK programme channel) are running an on line test for people, to assess whether they show traits of autism. The test lasts around 5 minutes, and breaks down into different categories.
It is not a tool to diagnose yourself or someone you know, but it does give interesting result readings and information.

  The programme is hosted by Anna Richardson 

 who meets leading experts to explore deeper into autism. 

When J was a toddler, and he was not reaching communication milestones, our journey began. As is usual, it started with a hearing test to rule out hearing loss as a reason for his lack of speech and understanding.
I have mentioned before in my blog, that we then saw a specialist who saw both myself and Joseph in her office for around 15 minutes, and handed me a leaflet about autism, and telling me that is what he had.
I went home a little shocked and in denial ( denial from not knowing anything about autism ), and got out my huge A-Z family health book. Under autism was a small paragraph telling me what J would never be able to do or achieve - No marriage. No relationships. No career or job. Unable to live independently.
That was it. There was nothing at all positive or inspiring. It was incredibly negative.

That was all the information I had. A leaflet informing me the same as what the A-Z family health book was telling me. The Internet was not as freely available and reliable as it is now, and I had no way of accessing anything on line - and I doubt there would have been much anyway, as there was no real hub of social media and information portals. Back then it also took five minutes to download anything as well. It was almost archaic as to what we are all so used to now.

We moved soon after, and the new GP we registered with said a snap diagnosis like that was not the norm and we would have to attend a weekly assessment session at a child centre, for a year, before a formal diagnosis was given.

The weekly sessions were hard in some parts for me, as I attended classes to teach me more about autism, (whilst J was being observed in their play room) and the reality of a new world of special needs was daunting and intimidating.

As is obvious by my whole blog (!), J was given the diagnosis of autism.

Since that time, 13 years ago, a lot has happened in the knowledge, and acceptance of autism.
Television dramas feature characters with autism or Aspergers, there are thousands upon thousands of support groups for parents who have children on the spectrum, Joe Bloggs in the street has heard about it, and most probably knows someone who knows someone who has ASD. This is a big leap from the closed door, dark room feeling back then, but there is still so much to explore and discover, and of course we can never stop educating people about autism, and indeed any special need.

This is the link to take you to the Channel 4 website that is hosting the test. We can only learn and develop more understanding around autism, by research and study, and the more people do this, the more we can discover.


Below is the blurb I have copied and pasted from the website. I did not write this, alter or modify any part.

How Autistic Are You?

Think you might be autistic? Struggle with social interaction, maintaining eye contact, or understanding the expressions and gestures of those around you? Do you have difficulty understanding other people’s feelings and managing your own? Or perhaps bright, loud or crowded places make you anxious? Maybe you feel like you don’t fit in…. like your brain is wired differently to other people. If any of this strikes a chord with you, then you’re not alone. Theory and research suggest that autism is a spectrum, with autistic traits distributed along a spectrum in the general population. This means, to a certain extent, that everyone has some degree of autistic traits.

How Autistic Are You? is a new Channel 4 programme from betty aiming to demystify one of Britain’s most misunderstood neurological disorders. Featuring leading experts and people from the autistic community, the programme will present a new way for viewers to visualise where they are on the spectrum of autistic traits, and a team of autistic people will also take to the streets to try to teach the public what it really means to be autistic.

To help our understanding of how autistic traits are spread across the general population we would like your help with some research - we want to know what autistic traits you have. Professor Simon Baron-Cohen is a world-renowned pioneer in the field of autism research with over 30 years experience. He has authored over 400 scientific papers on his ground breaking research and is the director of the Autism Research Centre, at the University of Cambridge.

As part of their work at the Autism Research Centre Professor Baron-Cohen and Dr David Greenberg have designed four short questionnaires (40 questions in total) to identify different autistic traits. The first three questionnaires examine your behaviour across three areas of autistic traits – Sensory, Social Interaction and Organisation & Routine. The fourth questionnaire examines your overall number of autistic traits. It is important to understand that none of these tests will diagnose autism – only specialist doctors and professionals can clinically diagnose autism. These tests will only help to identify traits.

Once you’ve completed all four questionnaires, you will receive a score that will reveal how you may compare against the general population and the autistic community. You will be asked at the beginning of the test if you are willing for your data to be used anonymously by Cambridge University as part of their ongoing academic research into autism that will also feature as part of the programme How Autistic Are You? You will not be asked for your name or any contact details as part of these tests.

The anonymous data will be used within the television programme. We will group the results together, such as male versus female ; occupation breakdown; diagnosis and by UK region – no individual results will be revealed. Cambridge University will also only publish anonymous results. Further details of betty’s privacy policy can be found here(this link will open in a new window) and details about the Autism Research Centre can be found here(this link will open in a new window).

Taking all four tests will only take you five minutes in total. You must be 16 or over to take the tests.

Awarded Pupil Of The Term!

As I have written before, J is unable to communicate to me any feelings, emotions, likes and dislikes, news, or even just have a chat. It is guess work on my part, in trying to figure out what he wants, if he is in pain, if he has a problem etc.

I rely on a 'home - school' book which I or the teacher can write in, and pass messages between us or let each other know what J has been doing.
At the end of the school term a few weeks ago, J's school bag had a laminated A4 certificate inside. It had his photograph on, and the wording stated he was the 'Pupil of the Term' for his school. He also had a gift voucher as a prize.

I exclaimed out loud to him when I read it, and showed him his certificate. He looked nonplussed and walked away - just what I expected would happen. In his 'home - school' book, it told me that he had had a special assembly and he went up and received his prize and certificate in front of the whole school. I can envisage that he walked up, took it, and walked off again. It doesn't mean anything to him, but to me it proves what an amazing young man he is, and despite his brain functioning on a different level, he still strides ahead with his enigmatic personality and hard work.

The school is fairly large in scale of pupil population, and so this is something I am extremely proud of.
My Boy is a very underestimated, understated young man, and is so much more than just a label of autism or special needs.  He is a super star! 

Foreword - Please Click To Read

               

I am a mum of three sons aged 17, 13 and 9, so life is hectic, fun, and a little bit crazy.
I started this blog on March 27th 2010, but only now have I been given an option to attach a welcome post to the top right of my page. So when reading from the beginning, my children were a lot younger (my youngest being only a few weeks old!)

I must apologise for my spelling, grammar, and punctuation during the early years of writing this blog. It is not something I am proud of, but thinking back, I would write my posts with a baby feeding in my arms, or asleep in my arms, or asleep in his crib for the total time of three minutes, two other children demanding attention, two very naughty dogs, and a house that created mess by just walking in and out of a room, whilst forgetting what it was you went in there for. I did all this by myself. I raised my boys by myself. When you have no choice, you just get on with it and do your best. So, my writing took a back seat, and my proofreading was little to non existent. 


My eldest son is 17, 6ft 3in (and still growing!) and has an autism diagnosis, alongside severe learning difficulties, and impaired communication. He is a cheeky, funny, arty boy, who challenges out dated opinions and views surrounding special needs. People remark to me how happy he is. He can be found strolling around the garden singing his repetitive songs ( most are unrecognisable to strangers, but I've heard them for years and despite him not being able to sing the words correctly, he has rhythm and tone). He was my inspiration for creating this blog.

My middle son is 13, going on 19, and is classed as 'neuro typical'. He likes football, music, playing on the X Box 1, and perfecting the art of not listening to me, but managing to ask for food every three and a half minutes. 
He struggles to be in the middle of two brothers who have special needs, and I find myself constantly at war within myself thinking I am not giving him enough attention, but not wanting to over spoil him. I often remark about the long waits for appointments for the other two to see specialists, and the funding cuts that continue to be implemented by this Government,  but there is even less support or help for children like him, such as youth groups for young carers or those with siblings with special needs. 

The youngest is 9, and is another budding artist, who draws designs to then bring to life with boxes and other items. His imagination knows no bounds, and he astounds me with some of his creations and stories.  He is lively, chatty, and incredibly loving, and tells me he loves me, on average, thirty seven times a day. 
He has a diagnosis of nystagmus and ocular albinism, alongside a slight speech delay ( which does not deter him from chattering non stop and asking questions). He has been attending a special needs school for 18 months, and they have been tremendous with him. He is a little whizz at maths, and his reading and writing has developed enormously. He loves attending school, and if I'm being frank, I've never come across such kind, loving, inspiring, and exceptionally dedicated and talented staff before, so it's no wonder he is eager to attend every day, and loves to talk about his day with me. 

As for me, I am 41, but despite having 3 sons, I still feel 19 on some days. I am an avid reader of books (not Kindles as I love the feel and weight of a proper book, and page turning), I adore cheese, I used to play the violin in a youth orchestra, sing opera for my county, and I'm a huge music fan and love all genres of it.

I have had many challenges and personal battles to deal with (many before I even had children) in my life, but I always try to remain positive, upbeat, and smile. I find joy in giving to others, be it a compliment, advice (which has been asked for), gifts, or just my time. 
I've received many hundreds of emails over the years, and have made dozens of friends from around the world, who stay in touch via email or other social networks, and I'm so glad we have this technology available to us, to enable us to learn, connect, and support one another in the confusing, stressful, and roller coaster life that is being a parent to a child with special needs.

Thank You For Stopping By

Sensory Issues That Affect The Whole Family

As I have been a mother now for nearly 15 years, I thought I was quite attuned and 'in touch' with my children, and their needs and wants, however I was abruptly reminded the other day, that I can never know it all, and sometimes I should not just 'think' I know my children inside and out, but actually ask them more often how they feel.

As we moved recently into a new area, we have changed 'professionals' who are involved with the children who have special needs. We have had one such person visit on several occasions, to assess the level of need of each child, and myself, (as parents and legal guardians can get worn down and desperate at times too).
On the last visit, which was for her to be able to complete her assessment and submit it to a panel of 'experts' (note my usual sarcasm at that word), she had some questions for the children. Despite her seeing on her last visits that J is not capable of answering a question, as he will reply to you with the very question you have asked (echolalia), she asked again if she could talk to him. It makes me chuckle seeing him being his normal self, and not giving her the answers she had hoped for. She can see, and this is something that is noted by so many people, that J is an extremely happy young man. Yes, he has some days where he is more stompy on the stairs, getting stressed about the noise levels of his younger brothers, or the fact I will not allow him any more cola, but that I put down to hormones and him being a teenager, but in his whole self, he is contented and happy. He sings his songs ( repetitive ones he's sung for years), laughs, smiles, and is a laid back, chilled out boy.

When she spoke to the other two, she asked them if they wanted to go into a different room, away from me, to allow them the freedom to talk about how they feel, and without them worrying they might upset me, but both boys replied "no".
I was pleased they felt comfortable enough to do this with me, as I have always maintained to them that how they feel about having a brother with such a high level of special need is not wrong. Their feelings are valid. It is hard. It can be draining. It is restrictive. However, it is not bad or wrong to feel this way at times.

The youngest one, W, who has a lower lever of special need, but is still quite demanding in his behaviours, spoke first, and he spoke generally about J sometimes going on and on about wanting cola.

It was O, who is nearly 11, who opened up candidly about his feelings.
Most of the things he spoke about, I was aware of. Things such as how he feels people stare at us when we are out, and point or make out they are talking about us. How we have to plan trips to the playground around the less 'peak' times, so that it is not too busy, and J can get on to a swing, and not have to stand around getting stressed.  He feels embarrassed that he has brothers who have special needs, and he doesn't like to talk about them at his school - I believe he can be just himself, O, at school. Not O "who has the brothers with special needs."
Then he was asked what he doesn't like the most about J, and his response has resonated through me for the last 24 hours, mainly because I didn't think it affected him, and now I feel guilty that I should have known...


J has, for the last 6 weeks or so, been making himself sick. It is something he used to do around 8 years ago, whereby he would steal a 2 litre carton of milk, drink it all as fast as he could, and then vomit it back up, whilst laughing. At that point, I had to hide food and drink from him, as he would eat until he made himself vomit. It was disgusting. He'd do it in the garden, on the carpets, in sinks, everywhere. We looked into Prader Willi syndrome ( PWSA link), as a GP believed his over eating was linked, and the vomiting was a symptom of that, but it was a dead end. It faded away within a few months, and I thought (or rather hoped) that was the end of it forever.
So, to hear him being sick in the toilet that first time, nearly two months ago, I thought he had a bug or virus.
But he was laughing about it. Whenever he has been sick through a virus, he is curled up and has a fever.
Over the next few nights, I would hear him being sick in the toilet, followed by lots of laughter and jolly chattering.
I tried to follow what a psychologist had told me to do before, which was to ignore, but after the first week of nightly vomiting, I had to intervene. I told him "no" when I heard him begin the coughing that he does to start it off, and he'd vacate the toilet, but, I cannot be on watch 24/7, and sure enough I'd hear him doing it again, usually when I was tied up with one of the other children.
As we are reaching the end of the Easter school holiday, J has had the days as well as the nights to make himself sick. He has resorted to drinking a lot of water from the tap to help him, as I have had food and drink locked away again in our new kitchen (solely for the purpose of not allowing J to steal food - despite him not having PWS and the vomiting stopping the first time 8 years ago, J would still steal as much food as he could, and proceed to eat it all as fast as he could, so I had locks in the previous house to stop this, and had to do the same again in our new house.)
His forced vomiting has not abated, and I am getting increasingly worried about the impact on his health.
He is not a slim boy for starters, which helps I suppose by him not becoming desperately weak and thin within days, but he is losing nutrients and the stomach acid cannot be good for his teeth and throat.
We have a long wait to see the psychologist, and the GP cannot offer much help, as this is not in the realms of offering counselling or simply explaining to him the damage he is potentially causing to his body.
I will be talking to his school when term begins, as I require them to monitor him during the time he is in their care. I am not asking for someone to shadow him all day, merely that an adult hover around the toilets when he uses them after lunch or snack time, and to listen out. Vomiting is not a quiet affair, and so the person doesn't need to be in that close of a proximity to hear if he is making himself sick. It is a few minutes out of a school day that I will be asking them to assist me. As it is a special needs school, I hope I am not met with reticence or hesitation.

I am not a medical professional, but I have tried to rule out any reason for the vomiting - blockage? Allergy? Indigestion from the rapid eating? Sensitivity of the stomach lining?
I have monitored him. Made notes in my phone. I am inclined to believe it is a sensory issue. As he has to urinate the second he feels anything in his bladder, I am persuaded towards linking this to his stomach - he feels it full, and enjoys emptying it out. Discovering that vomiting can excavate his stomach contents within seconds has become a habit. A habit that he is enjoying.
I just have to put a time limit on this behaviour, before I have to demand more intervention from the professionals, but quite what they can suggest or implement is something I am sceptical about.

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So, to go back to O, and what he divulged, he said he hated hearing J making himself sick every day and night. It made him feel sick himself, and angry that he could hear J laughing loudly after each episode.
I never thought about the impact on the other two, and for that I felt wounded by my own lack of motherly instinct and care. I sat there, winded almost by his admission. I added this failure of my own doing to the growing list I have stored in my head.

I realise that I have to remember all of the children can be affected by something I (wrongly) presumed wouldn't do so.
It is hard for most people, including myself, to understand just how he gains enjoyment from this kind of activity, as for us, vomiting occurs from painful viral infections, tainted food or drink, or from excessive alcohol consumption. It is not pleasant and is not enjoyable. I myself have emetophobia ( useful info here ) and cannot understand just how and why he wants to do this, but I have to accept it and try and work with him in helping him to stop.

As for the gorging on food, he still tries all day, at any opportunity, to grab food and run. He stole one of his brother's Easter Eggs, in the speed of sound. We have to think constantly about hiding food from him (although J is like a blood hound and can sniff out the merest crumb of food from three miles away), locking it away, and watching him like a hawk when food is out for cooking purposes. This behaviour has been present for years and years. It never ceases. But as I said above, PWS has been ruled out before, as he does not present with any other classic sign or symptom.
I tend to explain it in this way -  J's trait of stealing food and eating it as fast as possible is similar to a wild animal or even out caveman ancestry - he doesn't know when his next meal is coming, and he believes if he leaves any for even the shortest second, it will be taken from him, so he grabs what he sees and runs.
As we have two Labradors, I also make light of their tendency to behave as if they are just one meal away from total starvation - there is never a meal shortage in this family, but the dogs and J would lead you to believe otherwise!

If you have any help or hints, please contact me via the link on the main page of this blog, or via my Twitter page. Thank you!

Journalism And Special Needs in 2017

Recently one of my children's schools were featured in a local newspaper article, and I proudly found the on line version, observing my son was a part of the photo they used.
Unfortunately my smile faded after reading the first paragraph, as the terminology used by the reporter was crude and outdated. The subsequent paragraphs failed to be anymore well written, and compounded my feeling that the reporter had no understanding about special needs, and equally important (for a writer) had little grasp on writing a sensitive and informative piece.

The print version of this article was written slightly differently, however the journalist still wrote with a naivety that harked back to an era where anyone who was slightly 'different' was ostracised from society, and called very inappropriate names.

The journalist was billed as a 'junior' which would lead you to believe that a senior reporter, and/or the editor would have (or rather should have) read through it, amended all of the poorly written, and quite frankly offensive terminology, and produced a highly polished piece, that was representative to the actual interview given to the reporter. Local newspaper, or national broadsheet, if you are seeking to have a career in journalism, you should write with knowledge and research, and not like a 13 year old from 1955.

I read, and re-read the article, and (as is usual for me) decided to do something about it. Yes I could have just brushed it aside, putting it down to me being over sensitive, but if, in 2017, articles like this can be approved for publication, how are we ever going to move forward in our fight to have people with a special need or disability accepted totally and without prejudice?

I emailed the Head of the school, explaining my sadness, and pointing out exactly what parts I found morally wrong. The Head of the school is highly pro-active and in touch with all of the students and their parents at school, and replied to me that evening. He took the reigns of this matter, and contacted the editor of the paper.
The Head also told me that the reporter had omitted most of the content from the interview he had taken with the school representative, which negated the purpose (in my opinion) of printing the article. The article (after hearing what was supposed to be written about) seemed even more badly cobbled together. How did this go unnoticed by the editor?

Within a few days I was forwarded an email, which came from the editor of the newspaper, which apologised about the content, the writing, and the out dated descriptions used by the journalist.

Very recently I was emailed again to link me to the completely re-written article which would remain in their on line pages. This time the article was sensitive, factual, and had no hint of an archaic attitude. The only copies of the original piece will be stored with people who have kept the newspaper.

I am glad I made the complaint. I could have been just another person who shrugs their shoulders and ignores, but that is not me. I have been a part of the special needs world for nearly 15 years, and I have seen the prejudice from society, heard the tutting, witnessed the staring and pointing, and been told in a variety of ways how bad a mother I am for having a child that just needs to have his disability slapped out of him.
We all need to continue to educate and inform those who have little experience of a disability, and continue to show that we are all human and we all deserve respect, compassion, kindness, love, and acceptance.

                                                                   Remember
                              Big waves always start from the smallest ripple.

World Autism Awareness Day and Month 2017

     

      Today is World Autism Awareness Day

                 

   And

    April is Autism Awareness Month

Let us all become more kind, loving, generous, and thoughtful.