Who coined the term Asperger’s Syndrome? Tributes to Lorna Wing RIP


Dr Lorna Wing who coined the term Asperger's Syndrome

Dr Lorna Wing who coined the term Asperger’s Syndrome

In fact I’ve seen Lorna Wing, the woman who coined the phrase Asperger’s Syndrome, a few times on TV but was unaware of her contribution to the lexicon of the autism community.

Not just that she was also a co-founder of the National Autistic Society (NAS) here in the UK in 1962.

Indeed so important was she that her death a couple of days ago made the new headlines.

Like so many of us in the ASD community it was having a child diagnosed with autism which sparked her interest the subject. I knew nothing about ASD until our son John was diagnosed in 2009.

Not just was Lorna a physician and a psychiatrist she was also a pioneering researcher in the field of autism. While her own daughter could be described has having “classic autism” she took up Has Asperger’s research into autistic children who do not have typical speech disorders as part of their ASD. So giving the now commonly used term Asperger’s Syndrome. She also saw that autism was a spectrum rather than a fixed set of diagnostic criteria.

The aim of this blog post is to collect in one spot a few of the obituaries and tributes to Dr Lorna Wing. For me, at least, she represents the tenacity that it see in so many parents of children with autism.

If you have written a tribute or know of a an obituary please feel free to put a link in the comments box below.

To start the process I’d like to share the UK’s Daily Telegraph obituary which will give you a great overview of Dr Wing’s life and the importance of her work. You can read NAS’s tribute here.

Thanks very much in advance. And thanks Dr Wing!


Autism and University Life. In the is guest post Ryan Hendry tells us about the transition to university from the point of view of a person on the autistic spectrum.


Holding Out a Hand

Holding Out a Hand

Welcome to our latest guest blog from a member of the autism community.  Today Ryan Hendry tells us about his transition from school to university as a person on the autism spectrum!

Ryan a 19 year old Law Student at Queen’s University Belfast, and I have Asperger’s Syndrome, which was diagnosed when I was 14. He also runs a group which aims to promote and raise awareness of Autism, Asperger’s and ASD.

You can read Ryan’s blog here http://whatsitliketolivewithautism.com/ or follow him on Facebook at
www.facebook.com/holdingoutahand

Ryan says “For several hundred thousand teenagers every year throughout the UK, the transition from secondary school to university is fairly straightforward. But for a number of people on the spectrum like me, the process can be anything but.

The difference in styles between school and university is enormous. From the timetabling of classes to the way classes are structured, everything seems to be different. As an 18 year-old leaving school education for the first time in my life it seemed terrifying because of the sheer number of changes I’d have to face.

One of my biggest fears was that the support that Queen’s University would provide me was going

Autism Awareness at University

Autism Awareness at University

to be a standard “box-ticking” type that would not be sufficient in order to allow me to cope with the change. However, at the end of July, the university asked me to attend their offices one day, in order to allow for an assessment of my condition. This was a very straightforward process and allowed the university to tailor the support that was to be provided to my exact needs, much to my relief.

My current support is much the same as it was in school. I have a note-taker that attends all my lectures and tutorial classes, and it helps me not to worry about being unsure of what parts of a lecture to note down, as well as providing a consistent style of presentation for the notes, helping me to keep them organised. The support provided during exams is also largely the same: I’m given extra time, separate invigilation, a computer to complete the exams on, and rest breaks if needed at set intervals. This continuation of support was a huge help in helping me settle in.

Facing my fears

The next big step is the change in scale from school. In my school, our classes had, on average, 20 to 25 people in them. In university, my lectures can have upwards of 200 people in the room at one time. As someone who has always had a fear of big crowds, this was particularly concerning to me. However, I found that although the number at first sounds very large, the lecture theatre that our lectures were held in was larger still, which allowed the crowd to spread out, helping to ease my fear of being squeezed into a room with 200 other people. For tutorial classes, these usually contain around 15 to 20 people and are quite close in style to classes in school so these did not represent a substantial concern for me.


My biggest fear was the reaction of other people. I had sometimes been bullied at my secondary school and although it had completely stopped by the time I started my sixth year, the fear started to creep back in when university loomed. The fear was less about being bullied, and more about being left out of the group and not being able to make any friends. I was also worried about the reaction of the other students when they would begin to notice something a little bit different about me. Would they be sympathetic? Would they be understanding? Or would they be ignorant to the problem? This concern continued over the course of the summer and, despite frequent attempts by my family and friends to persuade me otherwise, the fear never went away.

Settling in

The first day at university was terrifying until I attended the induction day that had been set up by the University. This was an extremely helpful day for me, as it helped me to feel a bit more comfortable. I realised that many other people were in the same position as me, starting a new part of their education, in a new place with new people. The fact that we all had shared interests allowed us to have a common subject to talk about and get to know each other about.

My experiences with other students have been particularly encouraging for me. I wear a wristband, that says Autism Awareness on it, and one of my friends happened to notice it and asked what it was about. I explained to her about my condition, and that I had set up a group to try and help other people overcome the same obstacles that I was now facing. This was the true test for me, as I had no idea what the reaction was going to be, or whether I should even tell anyone. Her reaction was one of slight shock and she said that she only understood a little bit about autism. She also asked me if I wanted her to try and let other people she knew about my condition, in such a way that it wouldn’t come as much of a shock to people, which did encourage me. The overwhelming reaction of most people to the news of me having autism is one of slight surprise, which quickly turns to understanding and also an interest in gaining a bigger understanding of the condition.

Adapting to my new life
Even with all these positives, it still did take some time to get used to the change, and I knew that it was always going to be a struggle at the start to get into the ways of life at university. I will admit the first few weeks were a huge battle, as for the first time in my life I was expected to buy my own textbooks and basically build my own timetable, in order to allow myself to complete my work on time and to an acceptable standard. This did take a few months to get used to, but I knew that eventually I would get it. There were a few hard days, and some meltdowns as the stress built up at times, but by the time Christmas had arrived I found myself in a good routine and starting to fit comfortably into the life of a student. There is the occasional day that I do have a struggle, or something doesn’t go the way I expected it to, but I try and learn from these in order to deal with the situation better the next time around. The support my friends have provided me with on the bad days has been very helpful. They keep telling me that everyone has bad days, not just me.

Looking back now, the decision to go to university has had an enormous effect on me, and it has allowed me to do things I never thought I was capable of. It has improved my confidence dramatically and I now feel at ease with being able to do the tasks that others find second-nature, such as buying my own train ticket, going for lunch with friends, going to the library to study, and being able to plan my own day has given me an amazing sense of freedom. As well as this, just recently I finally overcame one of my biggest fears, public speaking, by giving a talk to a group of teenagers who have autism. Although the group only consisted of a dozen people, it was something that I previously would never have even considered doing, but thanks to the confidence my experience at university has given me, I was able to do it, and according to the person in charge of the group, they said it was an excellent talk.

Autism – at what age were you or your loved one diagnosed as being on the autism spectrum? Please take our poll!

Autism Awareness

Autism Awareness

When I first started to write about autism on this blog a year or so ago my first post looked at the our son’s diagnosis with Autism Spectrum Disorder (ASD) about seven weeks before his third birthday.  You can read the blog here – https://patienttalk.org/how-easy-was-it-to-get-your-child-diagnosed-with-autism/ – it would be really great if you could have a look and maybe share your autism diagnosis story.  This will really help others going through an autism diagnostic process!

One of the things that has always interested me is at what age people get diagnosed with different types of autism such as Aspergers,  PDD-NOS or in our case  of our son classic autism.  In fact one of my wife’s cousins started her son’s autistic diagnosis when she saw the first symptom at around 10 months.  Constipation interestly enough!

So I though a poll would be handy to give us all an opportunity to pool our knowledge.  So please feel free to vote below.  If you want to share anything more please use the comments box below to add your thoughts.

Thanks very much in advance!

 


 

RinkjevanderWeij I was diagnosed at age 12 with ADHD and at age 24 with higher functioning autism.

I’ve had problems fitting in to the world my whole life but my diagnosis has made it easier for me. You could say my life began anew with the diagnosis, because people understand better why I do things the way I do or why I react in a different way.

irlam7 Watching casualty tonight and they tell parents that there son might be on the autistic spectrum and they break down. From my experience of having a child on this spectrum, I must say through all the ups and downs of my experience with my boy it’s been a pleasure. I have a daughter who is on the doesn’t do what she’s told and knows better than anyone spectrum and wouldn’t swap any of them for the world. I would like to say I am a proud father of a boy with aspergers.
diamz i live in Laredo tx and was wondering where can i take my son to be diagnosed or re evaluated , my son is 9 yrs old and was diagnosed with ADHD at the age of 4 but we have been having lots of problems with him at home and need help , not sure where to look can anyone pls help us out .. Thanks Diana..
terri fleming my son was diagnoised at age 11.  After years of being told we had just babied him too much, he was the baby in a family of 4,hes lazy. all things I was told. Just read to him over and over like that was all he needed. I learned to respect my mom voice. I knew my child was smart, and I also knew “something ” was different about this little boy. We’ve come along way, home schooling now, hoping to return to a different school next fall. I have learned so much from watching this little guy learn how to live in this noisy, fast paced world. he is so forgiving and loving even when other children are just down right mean to him. If as a parent you sense something about your child and your not getting the answers or help from their school or DR. keep looking!  Your child needs you to fight for them, they don’t have a voice unless you speak for them.
mikalena My son was diagnosed with autism at 3 then he had a MRI which diagnosed him with multiple Brain lessions he has difficulty with his balance he falls easily when running cant climb without falling and is being fitted for a wheelchair Please is anyone out experiencing this I’m so lost and scares of the next steps

Autism! Should Asperger’s Syndrome have a separate diagnosis from other Autistic Spectrum Conditions?

Autism Acceptance

Autism Acceptance

When our son was being diagnosed with Autistic Spectrum Condition (ASC) nearly seven years ago now; one of the points of discussion with various healthcare professionals was the terms of reference of the diagnosis.

By that I mean what sort of label would our son be given.  Aspergers, autism or the then unknown to us Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS) were all explained to us.  But we were told that we would not be given an Aspergers diagnosis.  Why we asked?  The answer was simple.  The local council say Aspergers as “not a problem”  and this would not fund and treatments or early interventions.  Therefore the local healthcare professional always diagnosed with the label ASD. In fact our son has classic autism so no problem there.

At the same time in America a different process but with a similar outcome was underway.  In fact this was the removal of Aspergers as a diagnostic category in and of itself.  You can read us more about it here http://www.livescience.com/37333-dsm-aspergers-disorder.html.

At the time there was some sharp discussion about the issue within the autism community but quantitative opinions seemed to have been ignored.  So we though it would be useful to run a  poll trying to see if there is a consensus view from the autism community.

We would be very grateful if you could take part in the poll below.  Please use the comments box to share your view and reasons behind it in more detail.

Many thanks in advance!

YvonneScott1 I am undiagnosed , but having gotten to the age of 64 please believe me I know I have asperges . I have struggled all my life trying to copy other people’s responses . Since turning 60 I seem to have come to the conclusion I am just who i am and I’m now comfortable with being “different” however I think if I could officially identify myself as having asperges it would make me more comfortable.
JaneRitchie I have 2 sons, my 8 year old has a diagnosis of high functioning autism, where my 6 year olds diagnosis states he is on the autistic spectrum with aspergers. Both are very different children with very different support needs, so I am grateful their bits of paper state they are in different bubbles.
sneedley13 I agree that there should be a general heading, but I do think each ‘area’ should have its own diagnosis, especially when it becomes obvious which way the child is tending. My son was diagnosed ASD, but when he was assessed by CAHMS, they told us that he had markers for Asperger’s, Autism and Dyspraxia, as well as being mildly Dyslexic. We were told that because there were more markers for Autism than any other ‘area’ that is the diagnosis they would give although we were given info about Asperger’s and Dyspraxia too.

I think the biggest problem is that, while we can all compare behaviours/traits/issues, no two ASD children are the same, which make diagnosis and therapies all the more challenging. We have found that we just try what we think might work, and if it doesn’t, we try again. We are very lucky that Connor has an excellent TA at school.

@everything I really feel for you, and shed a little tear when I read your post (and please don’t take this as condescension, I can assure you it is not!) I cannot imagine what your day-to-day life must be like, and I can completely understand your frustration around us complaining about things that must seem almost trivial to you. But please do NOT apologise for ranting, that is exactly what these kind of support groups/sites are for! Stay strong, and God bless

faithfuldad I think there can be a general heading, yes, but each subject should have its own separate and distinct diagnosis. ‘Specialists’ have had difficulty assessing our son and have given him different assessments over a period of 5 years. The only agreement btw their assessments being that he had learning challenges. A lot more attention should be paid to deeper research in this area and we are keen on being a part of it. Our hearts and hands go out to all parents and children faced with this challenge. We hope that all will go through this with faith, commitment, encouragement and especially positive results for both children and parents.
CathandLogan In reply to momof2asdkids.Unfortunately there are alot of aspie children who have an asd diagnosis just because they can get better funding that way. If the doctors are going to have to abide by the rules around diagnosing then I think it is a good idea. And sorry to say @mumof2asdkids but it would be very likely that your child would be put into hf asd or aspie group. and alot of parents will resent this too. My son is mid range asd. Non verbal and only will be able to attend a special school, with little expectation to achieve. I too have to wonder what will happen to him when I am not here to look after him and he too will need someone to care for him for the rest of his life. Those with kids at school have no idea how lucky they really are and really have no way of understanding what it is like to have a fully disabled child.
momof2asdkids In reply to everything.everything  I Agree, there needs to be a separate diagnosis for each. My ASD child doesn’t have classical or severe autism, but he does have moderate ASD and because the school system can’t “see” his disability, they are choosing to pretend like it doesn’t exist. He stims in class, he is clearly different than the other children, you can’t understand him when he speaks and he does more screaming than speaking, but because he can memorize letters/numbers/words/flash cards they want to slap a Aspie label on him and he just *isnt’* there. I would love for them to have a separate HFA/Aspergers diagnosis just so we can bring his ASD diagnosis to the school and tell them “look, he’s not HFA/Aspie, so you need to help him and not tell us to wait it out”.
tjnel In reply to everything.everything I totally agree. My son has what they call mild to moderate ASD, but I don’t see him as having autism or being autistic. It’s confusing for people who aren’t in this world, as soon as they hear the word Autism they think ‘Rainman’. Yes our son has issues with coping, but it’s manageable for us. Most of the time we can reason with him. I have never had to clean poop off the walls. What my son has, and what your daughter has, I believe, maybe on the same spectrum, but it’s not necessary to put them in the same box. Why they have to change things just when they are being recognised is beyond me. I view Autism as being a bit harder to deal with than what we have to deal with. We got lucky. I guess it’s a convenience for the medical profession to put all these labels under the same umbrella.
everything I don’t want to undermine the struggles aspie go through. I know it’s important for them to get therapy and that’s why they classified it this way so there’s a nice check box next to the dr forms so they can get help as much as “regular” ASD kids.
HOWEVER, I do not relate to HF autism or asperger’s kids. This is not my world. it is super frustrating to go into threads where they are so up in arms that the majority of ASD kids were labeled mentally retarded and they were offended. Well, before aspies were grouped in yes.. 70% had that label and it’s not awful it just is and we work through it and use our therapies. Or they get offended that people want to cure autism or this or that… they just don’t GET what it’s like to have a LF/severe/ classical autism kid and that is super frustrating.
So yes, I would VERY much like to not be grouped together. When I go to a forum for support it’s usually HF people who don’t get anything I am going through and it is beyond frustrating!  My life isn’t about quirkiness or even  not enoughfriends at school, or being too smart, or not socializing.. my life is cleaning poop off the walls.. wonder  how I am going to deal with a period in a diaper when she turned 12. Knowing she most likely won’t ever speak, use an ap to speak, point, marry have kids be toilet trained.. ever know that I am her mom. I wonder if she will every be able to use a spoon or drink without choking every day and when I have those concerns people just say optimistically give it time. Those people don’t get it either. You can see your future at a certain point and it’s fine but don’t belittle the situation. It’s hard! I pray my kid becomes and aspie but probably won’t. She will have the mentally retarded label and the severe label and the non verbal label and that’s our life. We just don’t relate at all to doesn’t have enough best friends. My kid could care less about friends. Wouldn’t be able to learn their names anyway.  I am having huge issues with this lately so hence the rant. Sorry but it’s true.

“Travel my journey before you judge me” – Behaviours that parents of children on the autism spectrum find most stressful and difficult. Karen Brown reveals the results of her recent research

Autism Awareness

Autism Awareness

In this guest blog Karen Brown shares the results of her recent research in the behaviours of autistic children and the challenges to parents.  Brown says “I am very grateful and thankful to all the parents who took the time out of their already busy lives to complete my survey. A lot of parents passed my survey onto others, and many parents gave me encouragement, positive feedback, and took the time to personally contact me. I admire and respect their attitude and dedication to their amazing children. Thank you to my beautiful children Justin and Chloe, who have inspired me to learn all I can about ASD and gifted me with the experience of seeing the world through different eyes. Thank you to my supervisor Associate Professor Cyril Latimer, who answered my emails so promptly, gave advice, yet encouraged so much freedom, and supported me when I need it. “

 

The purpose of this study was to research what behaviours parents of children with ASD found the most challenging, difficult and stressful. Total response rate from parents was excellent with 417 responses at the time data analysis began. After controlling for missing or incomplete data, final number of participants for statistical analysis was 348. Of the 348 respondents, 219 requested a copy of the results.

There were 333 female parents and 15 male parents from multiple countries around the world: United Kingdom 71, Europe 9, United States 120, Asia 4, Australia 112, New Zealand 10, and Other 22. Information for the children was: 77 female, and 271 male, with 266 under the age of 12 years and 82 over the age of 12. Category of diagnosis was segmented into autism 129, Asperger’s 169, and PDD-NOS 50.

Investigations of child gender revealed no significant effects on parental stress, therefore indicating gender of child is not linked to higher or lower stress in parents. Diagnostic category of Autism, Asperger’s, or PDD-NOS was also found not be linked to parental stress, with no difference in parent stress found between the three categories.

Age was segmented into two group of over 12 years of age and under 12 years of age. Age was found to be linked to parental stress with parents of children under 12 years of age experiencing significantly higher levels of stress than parents of children in the older group.

Questions from the survey were segmented into four groups representing the categories of development, behaviour, future and stigma. All four categories were significantly related to parental stress. The most significant category related to parental stress was stigma, followed by behaviour.

The questions with the highest means for stigma were: “How your child is viewed by other children?”, “How your child is viewed by adults?”, and, “Your child displaying difficult or challenging behaviour?” Questions with the highest means for the category of behaviour were: Anger and outbursts, Child’s behaviour being the focus of attention, and, Screaming and yelling.

Highest rated questions for future were: Future outlook for your child for close social relationships, Future outlook for your child’s employment, and, Future outlook for child’s romantic relationships. Questions with the highest means for the category of Development were: Being included socially, Ability to make and retain friendships, and, Sensory difficulties.

It was clear that the main concerns parents had were in relation to the stigmatisation of their child, friendship development and the children’s acceptance by their peers. Challenging behaviours were strongly related to parental stress and the stigmatisation that parents felt when these behaviours were in public was also significant.

Feel free to use the comments box to ask any questions or comment on the results of Brown’s research.