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aspergers Aspergers syndrome no longer an official disorder.

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The American Psychiatric Association has just announced that Asperger’s Syndrome will be dropped from the manual used by psychiatrists to diagnose patients with medical disorders.

Asperger’s and other similar disorders will now be lumped under the label ‘autism spectrum disorder.’ Patients and their friends and families are worried that the removal of the term from official usage could further exacerbate the impact of the disorder for some sufferers.

But what does it mean to be living with Asperger’s syndrome? What does it feel like to fall on the autism spectrum? This beautiful post will help you understand the world from a different point of view.

By ANONYMOUS

Imagine for a moment a person who has grown up in a family where they only ever had pet dogs. Their friends and neighbours had pet dogs… all different breeds, colours and temperaments, but still, fundamentally…. dogs. They all went to the dog park together every afternoon and always had a raucously good time. They had never, ever, ever seen a cat. Not once.

Then one day they stumble upon an adorable looking creature that is cute, furry, has a black wet nose, four paws and whiskers and for all intents and purposes, looks exactly like the type of friendly, willing to please dog they had known and loved all their lives. Its tail is waving to and fro in what is perceived to be a welcoming gesture so they go over, ruffle up its soft fur and attempt to roll it over to scratch its belly, anticipating their affectionate gesture will be delightfully received. Only it’s not a dog, it’s a cat, and their interaction is interpreted very differently. Lets just say, fur will fly… and it will fly furiously.

Welcome to the world of a child with Asperger’s Syndrome. A solitary cat, surviving in a room full of boisterous dogs. Its every move being analysed, interpreted and modified based on the framework of rules, behavioural patterns and ingrained habits of the canine species. And as a result, being disastrously misunderstood.

Dogs wag their tails as a sign of happiness and anticipation of social interaction. Cats swish their tails as a warning to back off and give them much needed space. Dogs always welcome affection in whatever way it is offered to them. Cats will also offer heartfelt affection but it needs to on their terms, at a time that suits them. Sometimes they just need to be left alone. Dogs depend on your approval for their emotional wellbeing. Cats depend on certain things being in place in a routine that they can depend on, and will then reward your reliability with their unwavering friendship.

156943530 380x380 Aspergers syndrome no longer an official disorder.

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Dogs are inherently social. They are pack animals with deeply entrenched hierarchical rules of canine society and as a result are desperately eager to please, and occasionally challenge, the pack leader. As puppies, they will romp and play delightedly with their litter mates until they fall into an exhausted, but happy heap on top of each other at the end of the day. They rarely turn down an offer of affection and will warmly greet their family with furry hugs and sloppy kisses when they get home.

On the surface, cats may seem more aloof, but cat lovers around the world will be quick to tell you they are always keenly observing every detail and will reward those who take the time to understand them with warmth, affection, loyalty and love. Dogs are less discriminating in whom they shower with their boundless love, and this is part of their universal appeal, but it is a trait that cats simply don’t understand … or tolerate. Their love needs to be earned.

Dogs enthusiastically learn new tricks and are keen to show them off to gain further approval. Cats have extraordinary agility and mysterious extra-sensory skills… but will only display them when the circumstances dictate they are necessary. They need to be coaxed out and encouraged or will remain hidden forever.

Cats may not always look you in the eye, but they can see straight into your soul and will quietly commune with you while you process the problems of your world. Dogs will sense your unhappiness but may not fully understand it, so will entice you to capture some of their perpetual joy by grabbing their lead and making you take them for a walk to cheer you up. Their destination may be the same … but their journey could not be more different.

If you whistle for a cat to come to you, try to wrangle a leash onto its collar, drag it outside for a walk and hope it will thank you for letting it romp around the dog park …then you are both doomed to crumple in a heap of confused despair. Simply said, cats are wired differently to dogs. They are not better or worse. Just different.

So if you want to understand my child with Asperger’s Syndrome, try to think of her as a cat in a room full of dogs, and you will be a lot closer to coaxing out her unique gifts, helping her understand social behavior that she may otherwise find bewildering, and maybe in time her gorgeous, eager to please peers will gain a greater appreciation of the grace, beauty and uniqueness that bestows her, just like her feline doppelgänger.

The writer of this post has chosen to remain anonymous to protect the identity of her daughter.

How do you react when you see a child “misbehaving” in public? Do you automatically judge the child’s parenting skills or do you stop to consider whether the child may have a hidden disability?

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52 Comments so far

  1. deb

    Theres CCHR documentaries called .”Diagnostic and statistical manual”. “How psychiatric drugs can kill your child”. “The marketing of madness” “Pescription: suicide?” “Psychiatry No science No cures” CCHR stands for citizens commission on Human Rights

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  2. Guest

    Hi,

    I go to playgroup with a boy who I think has aspergers. His mum has always compared him to my daughter who is the same age. She at one point had booked an appointment to see a paedatrician to look into whether he has aspergers but cancelled and not rebooked. He is 3.

    The question is – would looking into this and getting a diagnosis at this age make much difference to his long term wellbeing? I have encouraged his mum to get him assessed – but she has family telling her that her son is normal. I strongly suspect that her husband has Aspergers.

    Thanks

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    • Kris2040

      A guy I was kind of seeing had a 3 year old who had been diagnosed and had some speech path and other stuff, but his idiot parents never followed it through. I often wonder about how he’s going now. I’d be encouraging her to take him. And take his Dad along too – it may help seeing what Dad is like.

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    • Quokka

      Absolutely. The earlier the identification the quicker the intervention can begin. There is a significant amount of research that demonstrates that early intervention is critical. Maybe sitting with your friend over a cup of tea and looking at some of the Autism Aust. Websites that talk about the different types of services that are available would help her feel following up is worthwhile.

      The diagnostic process is long and very very stressful. She may need your support with the process let alone the outcome.

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    • Lucinda

      Yep, early diagnosis is crucial. Early intervention funding cuts off at 7yrs which means children can miss out on valuable specialist services such as speech therapy. It can also take a long time to get a diagnosis which can result in children falling behind at school before funding for extra support is in place.

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    • Lucinda

      Early intervention funding cuts off at 7yrs so the earlier the diagnosis the better – later could mean missing out on valuable specialist services such as speech therapy. Also it can take a long time for diagnosis which can mean children fall behind at school while no funding for assistance is in place. Early diagnosis is vital :)

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  3. Tracey Groombridge

    I’m wondering if the use of mental health diagnosis’s for children is necessary at all, does it make the children feel better or box them in. Does it make the adults feel better about giving a name to a child? Controversial I know but it wasn’t long ago this theory was reasonable.

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    • Kris2040

      Why would you not want a diagnosis? There are so many interventions that can dramatically help people who are on the spectrum – the earlier the better.

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  4. Lisa Wilde

    I think this is an amazing step as Asperger’s Syndrome has been left out for too long. They are not getting rid of it just re positioning it. Which if you have a child under the umbrella you know is normal…and now will get some funding.

    Autisim is now defined as with language or without. So an Asperger’s Syndrome child will now be diagnosed as – Autistic with language. and they now are eligable for more funding based on the change.

    I have a child with Autisim no language, but my freind has an Asperger’s Syndrome child and our children are similar in their behaviour, meltdowns, sensory issues vary the only difference is that her child can talk more about things. That is it. But I got funding and she didn’t..

    Also our health professionals ( Pediatrician, Psychologist) advised clients two year ago about the 2013 change of the Autistic Spectrum. It should not be an outrage, but a movement forward.

    I myself have a low functioning spunky autistic boy who is 6.5 years old and he is the most amazing child in the world. I cannot take him anywhere or I have a huge anxiety attack, but so does he so it works well. I have had the 12K funding and have had private speech therapy for 3 years, that is it and it is all gone.

    However, at the end of each day I remember reading a book saying – I may be autistic, but it doesn’t define who I am…..

    So now Asperger’s Syndrome are clinically labelled as Autistic with Language.

    Thanks for listening – :)

    Lis

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  5. Anonymous

    I am 43,female,never married,no children,friends & diagnosed a year ago, high spectrum aspergers.

    For almost two years have lived the life of a hermit. Since diagnosis, I have changed habits from one extreme to the other.

    Tried counseling & current psychiatrist has tried Cymbalta,Auroxix,Lexapro,Enddep, currently on Fluoxetine & feeling worse than ever.

    Wondering if any other adults could share please what medications have assisted

    Thanks.

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    • Wenda

      I would recommend you to read Dianetics The Modern Science of Mental Health or if you prefer you can watch the Dvd

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  6. Full Time Mum

    I love it. My daughter does not have ASD but we have in the past thought that she may. Like children with ASD, she also has major issues when it comes to socialising but hers is apparently due to anxiety.

    I recently read a comment by a friends friend on facebook who responded to a status that had been put up about how happy and beautiful her 6month old was. The friend, who I dont know responded with good parents, happy child…

    I know, until some people have been there, they dont quite understand that it is not always as simple as that. And I was quite ‘dissapointed’ by that comment. Just because my child cried a lot as a baby does not mean that we were unhappy or bad parents… I really get frustreated by ppl who have such narrowminded opinions!

    http://www.fulltimemum.com

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  7. Charli

    A fantastic novel to read that truly illustrates what it is like to have Aspergers is “The Curious Case of the Dog In The Night Time” by Mark Haddon. Written in novel form (more for kids than for adults, but I found it a great read all the same) – I highly recommend it.

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  8. Anonymous

    My cousin was diagnosed with Asperger’s, and this is the perfect way for people to empathize with his situation and condition. What a great post!!

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  9. deb

    The disorders are voted in. I seen this in a CCHR DVD

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  10. Lars

    My son was diagnosis with aspergers in early prep this year, it has been an enormously challenging year for us and my son.. I feel he is a gift to me, I am able to provide all the help he needs and I am happy to be patient and supportive to him long term. So glad he was sent to us to guide through this world and not a family who wouldn’t understand him. He is perfect.

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  11. M

    This is a little bit misleading. The mothers post is an interesting insight into the life of a person with this disorder, but in reality Aspergers has always been considered on the autism spectrum. The new APA classification is just reflecting a move that extends throughout psychiatry towards a more ‘dimensional’ approach of considering psychiatric disorders on a spectrum; the same is happening across the ‘psychosis’ spectrum. This is largely due to the huge variation we see even in ‘healthy’ people.

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  12. lucinda

    I don’t quite understand why there is a problem. Aspergers is still a disorder and will still be recognised, it will just go back to being classified as high functioning autism which it is otherwise known as anyway. It shouldn’t have any adverse affect as far as I can see.

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  13. Anon for This

    I can relate to this post. Is it based on the two books All Dogs Have ADHD and All Cats Have Aspergers? My husband has ADHD but some people on his side of the family have Asperger’s as well and the cat/dog analogy just works so well!

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  14. Sara

    My step-son was diagnosed with Aspergers at age 3. This is when I first came into his life. He is now 11 years old. His challenges are vast but his inner strength is such an inspiration. In a family of 4 boys (3 step-sons and 1 biological son for me) it is sometimes easy for him to become lost in the sporting and academic achievements of his brothers. His talents are unique to him – his IQ is off the Richter (a common misconception that Asperger’s children are not smart – they are often incredibly intelligent), his creative imagination is so impressive and his gentleness and patience with his 4 year old brother (my son) is so wonderful to see. Schooling is such a challenge for him – he learns differently and processes information in a way that is unlike all other 11 year olds in the class. He has a team of people working with him from child psychologists, to Occupational and Speech Therapists and we steadily make progress each year. Each day is such a struggle for him – he may enjoy the day but in order to do so he has to work so much harder than the other children and my heart aches for him. His spirit is so special and I know he will continue to grow and learn while facing many challenges over the year but you know what? We all learn so much from him and he has taught us to see things from a different perspective. We are all blessed that he is in our lives. Try your hardest not to judge these children – they are very special and have so much to offer all of us.

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  15. suzanne

    My son still likes holding my hand when we go out,still throws tantrums,avoids crowds where he can…….My so is 14 years old and has Aspergers.Zayne was diagnosed at the age of 9,i knew from a very early age that there was something different about my beautiful boy.The thing with Aspergers is that there are no physical signs of them being different,therefore it makes it much harder out in the real world,as it takes many by surprise.Many people thought my son was rude,a naughty child,disrespectful.In facet,my son is the total opposite……no,he cant read body language or cues but that is just aprt of his life,he wont know hes been offensive or gone too far untill its literally pointed out to him.His intelligence is amazing and never ceases to astound people.In preps at the age of 5 he would astound his teachers with the knowledge he had,and often the teachers would look up his info just to see if this little preppy was right…..and guess what???HE WAS!!!!!!!.He attended mainstream school up untill mid grade 5,when he did shared schooling with a local Autism school,which,by his choice he has continued to do now in his middle years of secondary education.He makes me so proud each and every day,his confidence and independance continue to grow each and evry day.I just recieved his end of year school report,and compared to any child,its amazing.He excells at maths and public speaking……it just shows what can be acheived when you hace the love and support of so many amazing people around you.Yes,i am extremely sensitive and protective of him…which often is not neccesary,but thats the role of any mother-no matter what your child is like.He is an amazing,intelligent,handsome,loving young man and NO-I DON’T WISH HE WAS “NORMAL” as i often rudely get asked.What is normal anyway.He is my first born child who i love more than anything and i wouldnt change him for the world.Yes his world is different and it can be demanding and draining,but he didnt ask for this,and lifes challenges only push us to become better and stronger people…….which is all we can do!People tell me im amazing for coping,but i defiantely dont see it that way at all.Im a Mum,and as so,i take every day as it comes and fight every battle before me and work for the best possible outcome for me and my children…..no other option

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  16. Marie

    Interesting interpretation of ASD! My sons speech therapist siad it was like having a brain like a library! A library has catorgories with sub catorgories (haha just notciced the word cat in this!) but a person with ASD has trouble putting info into sub. Or as my friend says like a traintrack going straight ahead, there is no turns etc for them. I prefer to think my son is unique. In NZ they use ASD instead mainly because the powers that be that pay Child disability allowance dont recognise Aspergers for that payment. Every child is different so much to say that really ASD is far broader and a more useful term. I do however think that the first picture of child being excluded is a bad interpretation! My son parallel plays with other kids. It is up to the other kids as to weather they play with him and include him or not, either way my son isnt bothered and is happy to play on his own.

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  17. leah

    its very hard to get a diagnosis. i was turned down by a child psycologist who said. there is no point saying she has aspergers because there will be no such thing soon. previously the same psyc. said she is very likely to have PDD -NOS . its had dealing with her everyday. im getting no help !! :(

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    • Anonymous

      I would see a psychiatrist.
      Unfortunately there are too many psychs out there that don’t give the support and information that is needed

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  18. Daria

    Perhaps not having the distinction between Aspergers and Autism will actually serve to bring those affected by it together rather that to alienate people. As a therapist the new diagnostic criteria and definition suit the needs of children far better than the previous. In particular they better acknowledge the fact that although people with Aspergers may speak they can still struggle with language.

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  19. Steve

    I was diagnosed with Aspergers some months ago and I am in my 40s. This is a condition that can not be cured, only managed with the help of counselling, self help and support groups. The most difficult aspect is maintaining a relationship as those with Aspergers are often socially isolated and misunderstood and although I am married it has been a very difficult and emotionally challenging time for my wife. We find it difficult to display emotion and become fixated on a particular hobby, are routine oriented and are happy in our own company or remaining silent. We are working through our difficulties with the help of counselling as we love each other very much and I realise I am much luckier than a lot of fellow “Aspies”.

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    • Anon

      Did you ever think you may have OCD?

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      • Helen

        Why? What in that comment makes you think that? Fixation on hobbies and being routine-oriented are autistic traits as well as OCD ones. This is like if someone said to you “I have [illness]. I have [laundry list of symptoms which fit that illness],” and you replied “Do you think you might have [illness which fits one or two of the symptoms mentioned and none of the others]?”

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        • Anon

          Helen, I asked if Steve ever THOUGHT he may have OCD before he was diagnosed. My husband was diagnosed with OCD as a teenager but the more we read about aspergers the more unsure we are. It was an innocent question. I’d still like to hear from Steve.

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  20. question

    I would like to know what is the most difficult aspect of having Asperger’s and/or parenting an Asperger’s child.

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    • arokh

      As an and adult Aspie I’d love to help you here. Facial expressions and some comments are confusing. For example if someone uses a comment to end the conversation I’m know to take it literally, and also comment literally. Many people may think I’m heartless and cold, but I’m just highly rational and analytical and sometimes lack the social filter of tact. In other words I can, and will, be brutally honest without being aware of any hurt it may cause. I’m easily irritated when I can understand and process a new concept much quicker than the ‘average’ person and it holds up moving forward in the lesson or discussion (this has already created a small problem at uni, fortunately taken care of via the university disability unit). Another aspect is that I view the world as if I’m an alien and looking in. Many social cues and behaviours can seem alien to me, and really don’t make any sense so I may seem continually bewildered by how people act. One final, and I believe very important aspect, is I cannot stand sudden change to anything. Change make take time and allow for preparation. This may involve deciding to go away, I am not very good at spontaneous changes. For example if you tell me that we are going from having a day visit with someone to staying the night be prepared to meet heavy resistance. Not all people with Aspergers are the same hence I have given a view from my own eyes, however there are some common features. Also be aware that Aspergers and depression/anxiety walk hand in hand. Despite all these negatives I wouldn’t trade it for the world, the font of knowledge I have plus the ability to learn at a rapid rate, and the ability to separate myself in a stressful situation are worth more to me than having many friends and being a social butterfly.

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      • Renae

        I’m another adult living with an ASD.

        What this guy said.
        And the lady in the article.

        (Although, being a girl things are somewhat different, and I’m also a slightly different kind of ASD to what is commonly considered “Aspergers”… but it’s still very similar to what this guy said – particularly the part about ASD walking hand in hand with depression and anxiety.)

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      • neola

        Thanks for sharing your experience, it’s really helpful to know more and I’m sure it must have been tough for you, especially back when most people hadn’t heard of it.

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    • Sharon

      HI, I have two kids on the autism spectrum (Aspies). The most difficult aspects are dependent on the child. Some kids will only eat very limited foods, most are very routine bound so they rely on structure, which means flexibility is not possible for families. Many have sensory issues, so parties, shopping centres, and other social gatherings are too difficult. Many have sleep issues, so it’s not unusual to be still be getting up through the night when the kids are 4, 5, 6 years old. Most Aspies want friends. To watch your child try and fail to gain friendships is heartbreaking. Many Aspies have anxiety related issues, and later depression is common. With high suicide rates. I could go on, but you see there’s many issues to navigate and they are dependent on the child and how their particular autistic symptoms manifest.
      Thanks for the question and opportunity to share some information.

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    • question

      Thank you so much for helping to answer my questions! I am very curious about Asperger’s. I should have also asked about relationships too. What are the specific hurdles in intimate relationships that need to be addressed, and coping mechanisms? (apologies if this is too intrusive)

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      • Sharon

        There are some good web sites run by people with autism. They would be the best people to ask. Try WrongPlanet.com for starters.

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  21. liz

    This is timely for me. My son was recently diagnosed with Autism and today I met with the Autism Assoc to find out about funding, services, workshops websites etc. I was at my desk trying to get my head around it all when I dropped into Mamamia for a distraction. Thank you anonymous, it’s made me feel less alone.

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    • Mum2three

      Liz, you are never alone! My darling was diagnosed 18 months ago. Yes, it is definitely a lonely place at first, but you will find a small group of similar people and you will bond so tightly and support each other through so much. The diagnosis period is particularly difficult (heart wrenching!) but now you know what’s going on, you can do so much to direct the road ahead. Sending love x

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  22. Amandarose

    Love this comparison. Wonderful explanation of Aspergers. maybe that is why is should not be an illness – just a different type of person with different ways.

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  23. Celia

    The title of this article seems to be a wee bit misleading. My understanding is that asbergers is simply being reclassified as part of the autism spectrum – the APA are certainly not claiming that it doesn’t exist! I imagine the reasoning behind this is that asbergers and autism share many characteristics, and it can sometimes be difficult to classify which one an individual is affected by. I would assume that due to the similarities, they are being grouped as part of the same spectrum, rather than being considered entirely separate conditions.(admittedly, my knowledge is limited to what I’ve learnt recently at uni – does anyone know more about this?)

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    • guest

      You’re correct, in the same edition of the DSM they’re also reclassifying several personality disorders and other mental illnesses.

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    • redrunningbear

      I agree, it’s very misleading!

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  24. JanelleC68

    Whatever they want to call it, there are lots of adults around with AS who weren’t diagnosed as kids. My husband is one of them. Makes for a very *interesting* relationship.

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    • arokh

      I was only diagnosed last year. I’m now affectionately known as “Sheldon” to friends and family. I have a few more social skills than he does, but otherwise am quite similar (and have also wondered why people are laughing at what to me is normal behaviour).

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    • claudia

      I think my husband is one too. How did you manage to get him to get tested? It’s only because the lightbulb went off in my head that we have survived. I now recognise the triggers for the outburts, what he needs and how I need to speak to him. Ironically, he reckons i’m crap at communicating bc I don’t get to the point…um, yet I have no problems talking to anyone else…

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  25. Julie

    So articulate! It is very true that children who fall under the autism spectrum,can sum you up in a minute, and will interact with you when they are ready. My nephew is a gorgeous little boy, who is also austistic. I find it very frustrating when my mother in law demands kisses from him, and invades his space, trying to force affection, rather than earn it. It sounds like you are doing a great job as a mum – and know your child very well. :)

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  26. Jess

    This headline is ridiculous. Asperger’s Syndrome is merely being recategorised as Autism Spectrum Disorder. Asperger’s IS part of the autism spectrum. I believe eventually more funding and social support services will me made available to those on the low end of the spectrum from this (minor) change.

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    • arokh

      I doubt it Jess. There is barely enough funds as it is for those with high needs, let alone those of us that can function fairly well in society. But yes I’ve always seen Aspergers as part of the Autism Spectrum, and one can argue that most people in the world today fit somewhere on that spectrum. It’s just those of us with the gifts of Autism (though in many cases it can be a curse) and Aspergers present the features more than the average person.

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      • Ljs

        I agree with Jess. This won’t improve funding – and as we are finding now, many families can access the funding but finding approved providers who do school based visits is becoming impossible.
        I am unsure how it affects new diagnosis (increased cases?)

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        • Quokka

          There have been a few different attempts to use the new criteria against the currently diagnosed population as part of the DSM review process.

          One aspect of the reclassification is that children/people identified only on language based criteria will now be likely to be diagnosed with a specific language disorder – this will lead to reduced numbers of those diagnosed as Autistic BUT because the criteria are now clearer and have additional features this will in theory (taking into consideration the skill of the assessor) lead to more consistent diagnosis. This point is relevant because currently there is a small percentage ( I can’t remember off the top of my head but it is less than 10%) of people who have the diagnosis removed with time.

          So short answer no one knows yet. American research suggests a drop in rate of diagnosis anywhere between 5-20% but Australian research says maximum 5% but probably no change.

          We simply have to wait and see. This is of cold comfort to parents who on the up to 18 month waiting list for diagnostic assessment.

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  27. Cordeline

    I have an autistic nephew and two friends with sons who have Asperger’s… I never assume a child having a meltdown in public is being bratty. You never know what is going on in someone else’s life.

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    • MamaMel

      If only everyone was as thoughtful as you, Cordeline!

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