Challenging the view that Asperger Syndrome is ‘mild’

“Your daughter will not require any support at school.  She is only mildly affected” were the words of the clinician who confirmed our daughter’s aspergers diagnosis last year.  I wasn’t in a place to challenge those words at the time, having been told for the second time that one of my children was on the autism spectrum.  The shock that I felt at the time had stunned me into silence but now, having had over a year of adjusting to my daughter’s diagnosis, I can see how wrong and unfair those words are.

Aspergers isn’t necessarily mild and to say that it is suggests that the condition has little impact on someone’s life.  It may be less severe than those with more classical forms of autism but this doesn’t mean that people with aspergers don’t face challenges in their daily lives.    Unfortunately many people assume that because my daughter doesn’t have a learning disability that she doesn’t need support.  They don’t see that underneath the surface lie hidden difficulties that can make her life very difficult.

Like many girls with aspergers my daughter has learnt to mask her difficulties and almost pretend to be someone she isn’t and it’s because of this that people often assume that she is like any other 11 year old girl, except she isn’t.  My daughter has a lifelong condition defined by a triad of impairments in social communication, social interaction and social imagination.  In other words she is autistic and has difficulties understanding and getting along with other people.  Such is her difficulty in understanding the language and behaviour of others that she has been unable to form any meaningful friendships with her peers.  But her difficulties extend into other areas as well.  She struggles with change and prefers to stick to familiar routines.  Sensory difficulties make certain smells, tastes and textures so abhorrent that she prefers to eat the same old food stuffs and her dislike of crowds and noise can be so overwhelming that she prefers not to go anywhere.  Then there is her unique sense of hearing which means she can hear the minutest of sounds (the buzz of insects in a summer garden, the ice cube machine in a busy café).

In a world that is so sensorily sharp and where people’s behaviour doesn’t make sense, I’m not surprised that my daughter becomes so exhausted that she hides away in her bedroom.  It’s how she copes with living in a noisy, frantic and confusing world.  Many people don’t see this however.  They see a girl who is articulate and can talk animatedly about certain subjects. They see a girl who says her pleases and thankyous and smiles ever so nicely.  From this they assume that she is capable.  The problem is that they often assume she is more capable than she really is and don’t realise that the social and physical environment can drain her so much that she struggles to function properly.  In a busy school environment this means that her ability to learn is impaired but because her difficulties are more outwardly subtle she is often dismissed as being ‘mild’ and not in need of extra help at school.

As a mum, I can see how hard my daughter’s life can be as I see the fall-out at home as my daughter lets go of the anxiety and anger that has built up during a day at school.  It’s hard to see and it’s even harder to do anything about because much of what happens is linked to her day at school.  No matter how hard I try to alleviate her anxieties, at the end of the day you have to correct what’s going wrong in the classroom and that is something I have little control over.  All I can do is to share my concerns with school and hope that they will listen and take note.  Unfortunately being open with the school has had little affect as the school have insisted that there is nothing wrong with my daughter.  It seems that if they don’t see any obvious autistic behaviour then everything is fine and there is no problem.  If only they saw what I saw.  If only they really understood asperger syndrome.

Unfortunately they don’t understand enough and many children like my daughter are forced to struggle on their own until such point that they simply can’t carry on any more.  They can become too exhausted, run down, depressed even, to continue with school and as I have found, when an autistic child  has these additional difficulties then the challenges are compounded further.

The point is this.  If we are serious about improving the quality of lives of those with an autism spectrum disorder then we need to stop stereotyping them.  Too often I hear people demeaning asperger syndrome as a fashionable diagnosis or even a lifestyle choice or merely a description of someone who is highly intelligent but with some social angst.  The reality is that for many people such as my daughter, asperger syndrome can be a debilitating condition that can be made worse by their awareness that they are different from their peers.  It’s time that we stopped describing  aspergers in a way that minimalises their difficulties and provide the necessary support that these people need.  Hopefully then we will prevent the emotional and mental health problems that can happen to people like my daughter.

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20 Responses to Challenging the view that Asperger Syndrome is ‘mild’

  1. I so agree with you. My 12 year old son has Aspergers and he struggled his whole life. Until this year, the schools did not see what I saw. Trying convince the teachers and the school that he needed extra help was impossible. Just because his grades are good and he tests well above everyone else does not mean that he is not struggling, and working to his full potential. We moved this summer to be around better doctors, and it turns out the school we are at is awesome! The teachers understand and are helping him and me tremendously. Follow my blog, I just started it last week, to help share with others my experience with having a son with Aspergers.

  2. tina says:

    Having just been diagnosed myself as a young professional, Asperger’s may “sail under the radar” of school officials, but it can wreak havoc on the playground where bullies may abound. Asperger’s also plays a role in your work environment, and managing symptoms is KEY!!!

  3. tina says:

    Having just been diagnosed myself, Asperger’s may be mild, but it may affect how you get a job, how long you stay in it, and what kind of tasks you are successful at. So.. mild, but still something to work with!!!

  4. Jazzygal says:

    Wonderful post and I completely agree with you Deb. I sometimes think that ‘mild’ Autism, Aspergers, ASD etc is almost as difficult as classic Autism. I’ts not of course but it is VERY difficult in a different way. I think it must be very hard for the articulate child with ASD/Aspergers, who is very aware of others around them and of how things are, to realise how different they can be to their peers and how challenging they find different situations and subjects in school. We are of course lucky that they can usually (but not always) express this appropriately. It is very hard to see them struggle and suffer…..

    xx Jazzy

    xx

    • Aspie in the family says:

      Thanks Jazzy; you’ve described it well by saying that its difficult in a different way but even amongst those with aspergers there are individual experiences. Unfortunately it seems there are some stereotypes bounding around that suggests that aspergers is so mild or high functioning that it doesn’t deserve support. You know, when I heard clinicians telling us that our daughter was only mildly affected, only minutes after being told that she was being referred to a psychiatrist, I was speechless. Looking back I feel it was an inapproprate comment made by someone who didn’t really get aspergers and who assumed because my daughter could talk that she would manage. How wrong they were. Deb

  5. Cynthia says:

    What a wonderful and heartfelt post. Your daughter is lucky to have a mom who recognizes that she really does face serious challenges and is going to need support in some areas even as she’s instinctively learning to get by in others.

    I grew up in a time before AS was routinely diagnosed but I have a feeling that I would faced the same biases that you mention. I was painfully shy but because I was labeled “smart” and was generally a “good girl” who didn’t make waves, no one seemed to notice how much I struggled with social skills and sensory issues. It’s time for the professionals to start recognizing that AS presents differently in girls than in boys. Just because the symptoms in girls might be better masked, they aren’t any less problematic.

    My AS is something that people don’t notice at first–sometimes they don’t notice at all because I’ve learned so many little tricks to camouflage it–but the way it impacts my life on a daily basis is anything but mild.

    • Aspie in the family says:

      Thankyou for commenting Cynthia and for sharing some of your experiences. I very much agree with you about the need for professionals to better understand girls on the autism spectrum. As you say, just because someone masks their difficulties doesn’t make it any easier for them. Deb.

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  7. Great post and what a thought-provoking one as well. I have three boys on the autistic spectrum and a hubby who’s an aspie. One of my boys would be considered on the mild (or quirky, as I say) side of the scale. He’s fought so hard to get where he is and because he works so hard, he is able to mask many of the areas in which he struggles.

    When you also have children on the more severe end of the spectrum, I’ve found that people dismiss my middle child’s diagnosis even more easily because, compared to his brothers he ‘appears’ typical. But he has to work for it, and it’s frustrating to see his hard work pushed aside as irrelevant.

    He is under an IEP still, since he has additional learning difficulties, but this year for the first time he’s grade-level in all his subjects and we’re struggling to make sure his needs are met even while he is challenged to meet his potential and beyond.

    It’s not always an easy line to straddle, but I have to believe that over time society will understand that these different shades of autism exist for a reason, and the the children (and adults) with autism are all in need of the same respect and understanding, regardless of how high functioning they might be.

    • Aspie in the family says:

      Thanks for commenting Katrina. We have a similar situation in that our son has more obvious impairments than his sister and because of this people make comparisons and respond differently to both of them. What was worst was the assumption from school that I couldn’t possibly have another child on the spectrum and that my daughter must either be deaf or be copying the behaviour of her brother. They were looking for anything but autism and aspergers such was their objection to these conditions. As it was a full assessment confirmed our suspicions but it goes to show the lack of proper understanding of autism/aspergers. Deb

  8. All so true. I’ve wondered long and hard, and been round in circles so many times, about whether the label really matters. Whilst I’m sure my 5 year old fits the diagnosis of PDA (pathological demand avoidance) more closely than autism or aspergers, we’d have to pay to get that diagnosis as the condition is not ‘common’ enough for LAs to have heard about. So her diagnosis is ASD. She is however, very ‘bright’ in lots of ways, but we’re still not sure if she can be classed as ‘high-functioning’, despite lots of people saying they hardly believe she has ASD. Maybe as she matures the difference from her peers will be even less recognisable, although as with Aspergers, the differences may be so large that they cause more difficulty, and that is a worry as I’m sure it is for you with your daughter.
    I have come to realise that there is no point in telling people she had PDA as they won’t get it at all – it’s even less likely to be understood than ASD as it comes across more as naughty child than anything. But on the other hand, if I never tell anyone or help spread the word, then no-one will ever understand it, which must have been the case for those who first ‘discovered’/suggested autism and aspergers.
    Anyhow sorry to waffle, really wish I could express things as brilliantly as you do Deb!

    • Aspie in the family says:

      Hi Steph, I also hate the ‘high functioning’ label because it suggests my children are really able and don’t need any help. Whilst my children don’t have learning disabilities they do have a lot of difficulties that make their daily lives difficult but people don’t see this (or don’t want to see this). Because of this and the pressure they have lived under in an unsupported school environment, they’ve ended up with further emotional and mental health issues. What makes me really angry is that our local autism team have told me that they won’t support ASD children unless there is an obvious problem. I’ve challenged them on this but they won’t have it; they will only get involved once they ‘see’ a problem. In my opinion, this attitude is wrong. If a child has a diagnosis of a developmental disorder then support should come in as soon as possible instead of waiting for complications to develop.

      I understand your dilemma about whether or not to talk about a diagnosis or not. I think on balance we probably ought to discuss these conditions as more people will then hopefully start to understand our children better and treat them better too. I think that if we want an equal society then we have to break down these barriers of ignorance and that has to start with us challenging those around us. Deb

  9. Beth says:

    Very thought provoking post. I wholeheartedly agree that there is a common misconception that Asperger’s is ‘mild’ and needs little or no support. I have 2 children with AS ( 1 boy privately dx and awaiting formal assessment and a girl has an ‘agreement’ she has AS from all professionals involved and awaing formal dx too….. there in itself is one issue. When my son went on the assessment waiting list the wait was 12-14 months…. then it moved to 18 months and I have been told it is now a 2 year wait! Becuase he isn’t considered’ severe’ enough to be pushed further up the list, so he doesn’t take priority.) Both my children present differenty- the joys of gender differences in ASD aswell as the fact that regardless of ASD they are 2 unique little people. I challenge anyone who doesn’t feel ‘Asperger’s’ is ‘real’ autism to spend 24 hours in my house. The anxiety is apparent when you walk through the door often ( especially if term time- my kids don’t do well with school or nursery….. another issue with AS kids ‘ masking’ their behaviour and letting their furstrations of the day out at home where they are loved onconditionally), the stims, the violent behaviour from my son through heer lack of frustration tolerance and skewed emotional regulation, the lack of sleep, the ‘away with the pixies’ type way my daughter can be when highly anxious…. she goes into her own fantasy world, the severe reaction to smless, noises and bright lights, the eneless food issues, the excessive chewing- EVERYTHING ….. this is just a small insight.Socially? well, my son hides from people and he is bullied at school… at the end of last taerm it turned physical and I have the photos to prove it. My daughter is in the ‘active but odd’ category…. so she approaches people and asks repetitive questions , stands too close etc oh and she also has a stammer , made worse by social anxiety. So she is bullied too , in the way she is excluded from games and even just general conversation with other kids and she is aware of this.And out? well, in the last 3 weeks my son has narrowly being missed by 2 cars and I had to drag him back from nearly throwing himself off a wall onto a car park 40 feet below….he goes from zero- full panic in seconds and he just bolts…. and i don’t drive. Whilst I am chasing him my daughter is left alone and vulnerable. But my children are intelligent and verbal and the attitude even from professionals is that they are so mild they don’t need support apart from a bit of speech and language. And the verbal thing? well, both my children are selectively mute too- so when most people think ‘ ah well your children they can tell you what’s wrong and upsetting them ‘ – actually they can’t just because they CAN talk doesn’t mean they always do and becuase of their ASD they struggle to explain many things. My children are being let down by the medical system in terms of even formal diagnosis and there is little support, they are let down by the educational system as although intelligent, this isn’t enough to be a ‘success’ at school and that academic ability is worthless if aa child is crippled socially and bullied mercilessly as my beautiful children are. I can see the only option I have in the near future is to home educate. It is something I belive in, but it is something I will find very difficult for so many reasons. There are no specialist schools in my area suitable for my children and the mainstream system is clearly not suitable for them…. the story of so many parents of children with AS. So many children being failed but everytime parents fight the ‘system’ they are reminded how ‘mild ‘ their children are. Actually I think that is totally untrue and I think many people are confused with the term ‘ high functioing’….. a person can have high intelligence and be verbally very able but still be severely autistic… i.e. resistance to change, self stims, routine driven, low frustration tolerance, struggle with daily living, lieral thinkers etc, whereas in terms of ‘low functioning’, it is sometimes the additional learning disabilty rather than the autism itself that can supercede the autistic issues…. this is not always the case, but every child is different. I am so very with everyone from the next door neighbour to teachers thinking I live with 2 young geniuses who are ‘just a bit shy’…. the reality is VERY different. Best wishes, beth

    • Aspie in the family says:

      Hi Beth and thank you for sharing your experiences. You describe very graphically just how serious asperger syndrome or HFA can be and I hope other people will read your account. I identify a lot with what you have written. Both my children have been failed by both the health and education services in the UK and it has left me and my family feeling very abandoned and angry. I won’t go into the specifics here as I’ve written a lot about these failings elsewhere on my blog but suffice to say that I really think we have an ‘autism crisis’ in the UK. I have lost count of the number of times I’ve heard from families and individuals who have suffered in the way we have – delayed diagnosis, no support, inadequate schooling – the list goes on. It is clear to me that too many professionals do not properly understand autism and aspergers and that they often make judgements based on what they ‘see’. Seeing, in my opinion, is not enough to fully understand aspergers because symptoms can be so subtle it is easy to confuse them with something else such as shyness. Living with it or caring for someone with aspergers however, provides a much deeper understanding and it is this expertise that people should be tapping into. Deb

  10. Blue sky says:

    Aspergers and autism seem to me to be very difficult for most people to understand. Which means that people who have these disorders are misunderstood as well. Even by their parents sometimes – certainly my views have changed hugely since my son was diagnosed 3 years ago when I did think that aspergers was mild autism and that he would be fine with a little bit of help. I now see that it is not like that at all. I wish someone could come up with a really simple way to explain asd, perhaps as an analogy, because right now, it’s still totally misunderstood by most people. I have a daughter with cerebral palsy, and few adults misunderstand her differences…

    • Aspie in the family says:

      I agree with your Blue Sky that it is misunderstood by many. One of the biggest things I’m having to come to terms with is the extent of the difficulties faced by my children. For a while I was led to believe that aspergers was mild and that people with it didn’t need help but now I realise that this isn’t necessarily the case. I think the challenge is for people to realise that though there is a shared triad of impairments, aspergers is a very individual thing that can have a massive impact on someone’s life. Deb

  11. ive long felt aspergers should be a diagnosis and disorder in and of itself. i feel its place on the spectrum us unfair to everyone. if aspies stood as its own disorder more help would be given and more understanding and research of aspergers away from the sterotype of classic autism to make comparison and likewise people with more clasdoc symptoms will stop being compared to the functioning actions of an aspie…it should stand in its own right x

    • Aspie in the family says:

      One of the arguments against merging aspergers into one classification of ASD is that it is that more research is needed to see if asperger syndrome is a distinct condition. I am unsure myself. My aspergers daughter shares a lot of commonalities with my son who has been diagnosed with an ASD, not aspergers. From this perspective I can see the argument for having one label of ASD particularly if it meant my daughter getting more support. But I can also see that it might be problematic having such a diversity of autisms under one label. Thanks for commenting. Deb

  12. yve says:

    My eldest presents more as an aspie, these days but we’re not going to push to have his “autism” diagnosis changed because of these attitudes. His younger brother appears to be more severely autistic, as he’s non-verbal and has severe motor delays. Both boys require equal amounts of intensive 1:1 care and attention, though and life (and school) is really HARD for my “high functioning” eldest boy. He suffers extreme anxiety about various upcoming situations, to the extent that we have to studiously avoid following the ASD textbooks and giving him a build up to an event. Even at 8, his meltdowns are horrendous and frequent. And, he still struggles to dress himself correctly.

    He might have a huge vocabulary, an amazing memory and be mathematically gifted, but he sucks at the day to day expectations of life.

    • Aspie in the family says:

      Thanks for commenting Yve. My son has an ASD diagnosis and he is further along the spectrum than his sister but even though their autisms are different life is equally hard for both of them. In fact I sometimes feel its harder for my daughter as there is greater social expectation on her as a girl which she really struggles to cope with. I wish people would understand that autism and aspergers is not the same for everybody and that just because someone has good language doesn’t mean they can cope with daily life. Its one of the biggest barriers my children face. Deb

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