High Functioning Autism vs Aspergers: The emotions of labels.

I have talked in previous posts about the journey to diagnosis with B.  We had the meeting with the assessment team in the week of his 7th birthday.  My Mum came with me to hear the outcome.  I was really glad she did.

I explained in a previous post we had waited a long time for this meeting and really hoped that we were going to get some answers.

After talking us through a 20 or so page report we were finally presented with the conclusion that B displayed a range of behaviour and symptoms that was consistent with a diagnosis of ‘High functioning Autism’.  Despite the fact that we had spent a long time with the suspicion that B had an autistic spectrum disorder and that we had asked for the referral and the assessment process in order to confirm our suspicions this news came as a shock to me.  I had hoped, and even expected, that they would tell me that B had aspergers syndrome, but I had not expected them to use the word ‘autism’.  I’m so pleased my Mum was with me as she was able to ask the questions that needed to be asked.

‘Why ‘High Functioning Autism’? What’s the difference between that and Asperger’s syndrome?  It wouldn’t have occurred to me to ask such questions.  The Psychiatrist and Psychologist explained that there were many theories and systems used by a range of people in diagnosing and classifying autistic spectrum disorders, but in reality there was very little difference between High Functioning Autism and Asperger’s Syndrome.  So, we asked if there was little difference why had they chosen to use the term ‘High Functioning Autism’ rather than ‘Asperger’s’?  They explained that they felt the difference was really about whether the child seemed to want to communicate with others, but in doing so struggled to make the right social choices about how to engage.  On this basis their observations of B had revealed that he would quite happily have continued to play on his own and would have made no attempt to engage if he had not been prompted.  So they had come to the conclusion of diagnosing High Functioning Autism rather than Asperger’s.

Following this explanation we were able to clarify their understanding of B by explaining that he does want to engage with people, mainly adults, and only when he has got to know them reasonably well and is in familiar surroundings.  We did not feel that he simply didn’t want to engage with the world at all.  We were lucky in the sense that the professionals we were dealing with were very open with us in discussing their reasoning, but I know that this discussion only arose because my Mum had enough knowledge, confidence and just about enough emotional detachment to ask these questions.

As well as discussing the reasons for the wording of the diagnosis by the professionals the discussion also focused on the issue of different connotations of the labels of ‘High Functioning Autism’ and ‘Asperger’s Syndrome’.  My Mum felt that if B was labeled as having ‘High Functioning Autism’ many more negative assumptions would be made about his abilities and potential by schools, leisure providers and other professionals in the future, which may limit the expectations of others and hence his opportunities for development.  I have to say, at this point I really wasn’t thinking of much at all, so I did leave most of the talking and discussion to my Mum.  Thank Goodness she was there.  After some discussion it was agreed by the Doctors that they would change the wording of the diagnosis to ‘Asperger’s syndrome’ rather than ‘High Functioning Autism’.  They accepted there was very little difference and the differences were so blurred that it could be argued that B’s symptoms could be classed as either.  They also quite willingly accepted the view my Mum presented in terms of the use of the language and the different views and judgements that would be likely to be made by the use of the word ‘autism’.

So it was that B was diagnosed with ‘Asperger’s Syndrome’.

Although I had consciously hoped that the end result of all the assessments would be a diagnosis of Asperger’s because I felt it would offer an explanation and that it would then lead to help and support for us and B to manage some of the challenges, I was not prepared for the way I actually felt.

On the way home on the bus it all suddenly hit me.  It was real, written in black and white. I realised it would never go away.  I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour.  I didn’t feel the relief I had expected to feel.  That, in itself, caused feelings of confusion.  I felt sad and upset.  I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.

On top of all those feelings I felt guilty and confused about feeling the way I did.  I want to talk a bit about the guilt.  I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.

As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc.  I believed in the concept of independence being about enabling a person to have choice and control rather than in the literal meaning of being able to do everything for themselves. I believed that people are disabled by the barriers and attitudes that exist within society rather than by the nature of their impairment or health condition.  The kinds of attitudes I really disliked were those that pitied and patronised disabled people.  As a disabled person I did not feel that my life was worth any less than anyone without an impairment and I believed that no matter what impairment someone had their life is not worth less.

So, why did I feel sad?  B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label.  Why did I feel like my world had been turned upside down?  I was still his Mum, I shouldn’t be feeling sorry for him or myself.  Disabled people didn’t want pity.  As a disabled person he deserved rights and respect not pity and sadness.  At that time I did feel sad and because I felt sad I felt guilty.

The second element of my guilt was around the issue of the label.  In the few days after the diagnosis meeting the implications of the discussion about High Functioning Autism vs. Asperger’s Syndrome began to play on my mind.  Why did it mater what the label was?  If I believed that disabled people all had rights then why was it important that we had a lable at all, never mind whether it was autism or aspergers?  Why had I been shocked by the use of the term ‘autism’ in relation to my Son?  I should be challenging professionals, teachers etc. not to make judgements based on labels, not colluding with them by argueing for my Son to have, firstly a label, and secondly a label that would seem more acceptable (aspergers) than another label (high functioning autism).

I found it really difficult to deal with these feelings, I wanted to talk about them, but I didn’t know who to talk to.  D didn’t really understand why I should feel guilty.  He was OK with the plain sad part, but very quickly moved on to the practical ‘well we’ve just got to get on with it and do the best we can’ attitude, which I also agreed with, but couldn’t move forward emotionally.  I may have talked about it a little to my Mum and Dad, but I didn’t feel that they really quite understood how much the two emotions of sadness and guilt were clashing for me.  My friends again were very supportive, and all of them could understand the ‘sad’, but the guilt about needing a label and what the label was and guilt about feeling sad were just alien concepts to most of them.

In the end I had to bury the emotions and try to deal with the practicalities.  We had to deal with the diagnosis and try to find some support and information to help us manage the future for B and for our family.  I also had a job that I was finding very challenging at the time with all sorts of conflicts of its own, so I couldn’t deal with all the extra emotion, so I put it away and moved on.

This brings me to the reason for writing all this down and sharing it.  Hindsight is a wonderful thing and I look back now (4.5 years later) and know that there are things I should have done differently and things that I can share with others who may be in similar situations now experiencing the thoughts and feelings that I had.

I still believe that essentially people, usually parents, but sometimes adults looking for explanations, should not have to seek out a diagnosis and a label to be accepted and to legitimise their needs for support and recognition.  In an ideal world we should accept people for who they are and for what they can achieve and should support people to meet challenges, to make choices and take control based on their needs for support and not on the label given to them.  However, I know that on a practical level services do not work like that.  Society and systems are set up in such a way that resources are rationed and a basic way of rationing is to look at the label.

On a personal level I have stopped feeling guilty that we colluded with this system to get the label for B in order to access services and offer an explanation or even a justification for the way we and B lived.  I have come to accept that we only did what any loving parent would do, i.e. to do the best we could within the rules of the system, to support our Son.

I am now in a position to be able to write about my experience and hopefully to challenge some of the views of professionals about use of language and expectations.  I am now quite open with people that B has Asperger’s, which is an autistic spectrum disorder.  I will explain to people that Asperger’s is a form of autism and that autism is a spectrum disorder.  I will challenge people who make comments about Asperger’s not being ‘as bad as’ Autism.  I am able to do all these things now, which has helped me to stop feeling guilty, but it has taken a long time.

Society has a lot to answer for regarding the use of language, the judgements that are made and the way service rationing and allocation systems are set up.  The last 4.5 years have been a huge challenge for me, but I now have a job that I love and passionately believe in and allows me to go some way towards beginning to challenge these attitudes, but I also believe that in challenging the way society and systems are set up we must be very careful not to make parents and disabled people feel guilty for having to do the best they can to make current flawed systems work.

Thank you all for reading.

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About Violets Diary

Visually impaired Mum, with VI hubby, 2 disabled children. Disability campaigner, novice blogger and tweeter. Trying to put the world to rights and share our journey and positive stories. https://violetsdiary.wordpress.com
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28 Responses to High Functioning Autism vs Aspergers: The emotions of labels.

  1. Sooooo many similarities as you noticed with our situation. I am 100% with you that we shouldn’t need to label people to get the kind of support they need as individuals but am also trying not to feel guilty about having to do it to get recognition in a system that only works with labels. My L willl get either HFA or AS but we were told that the difference was in his early language development, something which I think Tony Attwood also talks about. I know though that the books say that the child with Asperger’s wants to socialise but I’ve never hard it said that a child with HFA doesn’t. Also, Asperger’s is coming out of the diagnostic manual soon and the diagnosis will just be Autism Spectrum I think so maybe Asperger’s won’t be used in the future. Tough isn’t it. Asperger’s has got less stigma for some reason and as you say we should be fighting against any stigma attached to the word autism. And the guilt, the guilt. We parents are just burdened with it aren’t we and all we are doing is our best so try not to feel it too much. Hugs to you.

    • thanks, I thought it might strike a chord. My B had early language, but they didn’t seem to refer to that as a reason for the diagnosis. It’s really confusing when different professionals use different ways of interpreting assessments. I guess the removal of the distinction between autism and asperger’s will help with that, but I know there are many who are not keen on the removal of that distinction, but that’s a debate I don’t really want to get into. It’s enough to deal with guilt about having to make the most of a broken system whilst challenging it from another angle. Thanks again for reading and commenting. x

  2. Special Needs Mum says:

    Thanks for sharing your story. As someone with two boys with AS I can empathise with how you feel. We are now six years post-diagnosis and every day life can still be a struggle – despite the same diagnosis, they have different co-morbidities and are totally different people.
    One is an easier teen than he was a child, the other is more difficult. Now most of my friends are all mums with special needs children – and you get more resilient with time, though there are still ups and downs.
    Tania
    x

  3. Special Needs Mum says:

    Reblogged this on Special Needs Jungle and commented:
    I’ve just read this really insightful blog by Violet’s Diary and wanted to share it with you.

  4. Zoë says:

    I followed the link from Special Needs Jungle to get here. This was very interesting and even now, eight years after my son’s diagnosis, it brought back a lot of emotions.

    I recall being told by the local health worker that children with an autism diagnosis could access the incontinence nurse (I forget the correct title – we called her the weewee lady!), while children with Asperger’s could not. My son’s consultant paediatrician said this was stupid and refused point blank to diagnose any child with Asperger’s. They all came under ASD, according to him. I am glad that he did, because as he has grown, my son’s difficulties have become more and more apparent. Autism fits the bill, where Asperger’s does not.

    I’m way past caring about labels, though, in the sense that he is his own person and all children are different, and all children with autism are different. He is now 12 and likes to hang around looking shifty in children’s play areas and men’s loos… As he grows, this could be seriously misinterpreted! In these instances, a label is very useful. It doesn’t define him as a human being, though.

    • I think that’s the issue. I hate labels because many people use them to generalise, but on the other hand they can serve as a useful explanation / door opener etc. but I also hate the fact that we have to rely on labels to do that. Thanks for reading and thanks for your comment x

  5. Such an excellent post hon:) Admittedly I drew a tear as I relate to some of your past feelings, fears and guilty feeling. I remember being told the diagnosis and despite knowing it in my heart it throw me and I went throw the motions.

    This is a great post for other parents and I really enjoyed reading it.

    Ps so true what u said able the system and how labelling shouldn’t matter but it does.

    Claire Louise

    • Hi Claire, I’m really sorry, I’ve just been doing a bit of blog tidying and found this comment in the spam folder. (must check spam more often). This is a lovely comment. Thank you and so sorry not to have seen it and responded earlier x

  6. very interesting post for me too.. i had the same path of thoughts and feeling on Asperger’s vs hf Autism. At the moment I am thinking that the acceptance by people has probably improved BUT it’s the kids on the high end of the spectrum that often are not or only lately diagnosed and in that regards it’s almost ‘harder’ – if you can really compare anything.
    i have also just read on someone’s blog that they did not get the funds they needed for help in a normal school because the “only” had the Asperger’s diagnosis, not autism. (yeah, i don’t get that either..) i am still in the phase were things are new, but as I said, this sounds much like me..

    • Thanks for reading & commenting. I think its hard for everyone in different ways, but it could be made soooo much easier if people listened to parents, took concerns seriously and didn’t look to blame kids and parents. I also hate all the assumptions that come with labels. Good luck with your journey. x

  7. pinkoddy says:

    I thought the difference in diagnosis of autism or aspergers was mainly one of language development in the early years. My oldest son has Aspergers and now it comes to my youngest the feelings are the same. Like you say still the same person – but it scares me that I wont be around to help them forever and society will not help them because it is largely ignorant – so life would be easier if I were the one with the problem and that there really was no asd. In fact my oldest who I fought for 7 years to be helped has had a dx for 6 years and still I try and convince myself that they got it wrong – it’s just my bad parenting. I was actually told my youngest isn’t “bright enough” to have aspergers. But yes the oldest wants to make friends but can’t and the youngest seems to have loads of people wanting to be his friend (and can be really socialable) but often is in his own world.

    Thanks for sharing- visiting via love all blogs.

    • Thanks, someone else said about the difference in diagnosis, my post is about what I was told by the people who assessed my Son, I had deliberately tried not to read anymore than the basics before we got the diagnosis as I was frightened of pre-conceiving too much. I think the difference in children on the spectrum comes back that classic quote ‘If you’ve met one person with autism you’ve met one person with autism’. Also I think they are talking about doing away with the diagnosis of aspergers. But as you say its really about finding the best ways of supporting our kids to deal with the world and other people’s prejudices. Thanks for sopping by & commenting. x

  8. gavinpandion says:

    Thanks for sharing, I think I see the choice between labels in a similar light. Have you noticed that the American diagnostic manual is doing away with the label “Aspergers” to merge it with HFA and develop a more restrictive diagnosis that will leave many people with mild autistic traits ineligible for professional help? Whereas treatment providers in the UK and Australia are becoming more open minded when presented with self-diagnosed adolescents and adults looking for specialized support services. I am of that type, I started seeing autistic traits in myself in my twenties and have found some of the literature on autism very helpful for gaining insight about myself, and becoming aware of my social blind spots, many of which I have been able to correct (at least to a degree) without professional help. Depending on your son’s age and his level of satisfaction with available professional support, you might want to turn his attention to the on-line self-help communities for people on the autism spectrum, where he can find advice from peers that might shed light on things the experts have trouble expressing in Reductionist English or whatever language they happen to speak. The intellectual history of the concept cluster of developmental disabilities, intellectual disabilities and mental illnesses is loaded with cultural baggage and misinformation that could affect the quality of advice he gets from professionals.

    • Some good points there, I was aware that somewhere, someone is looking at merging diagnostic criteria, My boy is only 11 at the moment and knows he has aspergers. He is very aware of some of the ways it affects him, but not of all the ways. He isn’t really interested in finding out more at the moment, but I know there is a wealth of fantastic information and support from others on the spectrum in on-line communities. I think there are probably a lot of un-diagnosed adults out there and I guess that as people become more aware they begin to realise there are explanations for the way they feel and experience the world. I do think that this is something to be considered by those who say that autism is on the increase. I wonder whether it is, or whether we are just more aware and people are able to diagnose it and seek diagnosis now. Thank you for reading and for taking the time to comment.

  9. solodialogue says:

    This is such an honest post about your feelings and labels and your growth over the years. I was a bit surprised to read how you sought the one label over another at first, given the other stops I made on my way back to this one but reading the whole of it made sense to me.

    I was very happy and excited to see how you view “disability” as that of those who do not fall within any of the labels and their inability to see the individual behind whatever the label may be. This is how I view it as well for my son. Not that I don’t have my moments of worry – I think we all do for our children, but it is encouraging to know that all over the world we are opening eyes, one post at a time.

    • thanks, I think it is going to be difficult to get people to see beyond ‘labels’ particularly as they are used to ‘ration’ services rather than carry out more complex needs assessments and the need to ‘label’ and identify is so ingrained within culture, but the more that need is questioned the more likely we are to gradually get a few more people to think about the issue.
      I’m glad you kept reading as that post was partly about me and how I had, and still have to sometimes, challenge my own thinking and how I have to accept my emotions as valid and OK, even though my head might be telling me they are wrong.
      Thank you for reading and for following.

  10. Liska says:

    thank you for visiting – you hit the nail on the head about working from home. This is my 1st and last week doing it. Wishing you the very best xxx

  11. Jazzygal says:

    Oh gosh, you brought back a lot of memories and emotions for me with this great blog of yours! And it’s 8 years since we got our diagnosis/label for our son. Even though I knew there was something wrong and that I willed them to give me a name for it I was so upset when they told me what I already knew….ASD. I dealt with it though, as we all do, and got stuck in in getting the services etc that my son needed. I became a great believer in labels. They’re only necessary to get the services so I fought like a tiger to retain ours when he moved from special to mainstream school…otherwise we’d have been left with NOTHING. Our label was changed after 4/5 years from ASD to PDD-nos…still on the spectrum so he kept his Special Needs assistant and his resource hours;-) That’s the thing about labels they can change as (hopefully) the child progresses. I was told that the Asperger label didn’t apply to my son (I see him as more of an Aspie) as he also has a language disorder.

    Wishing you the very best in getting your child’s label to work for him :-)

    xx Jazzy

  12. mari says:

    Thanks for visiting my site last week and sorry for the delay in getting back to you. I’m now aware of all the intricacies that AS and High Functioning Autism hold but I am so glad your mum was there to answer the important questions and I’m glad you got the ‘label’ changed as reading them both HFA does have negative implications for me too.
    Wishing you all the best and I saw the post underneath too – your boy is gorgeous

    • Thanks for reading and commenting. Labels are a very complicated and emotion laden issue and one that for most people they never have to think about. Thanks for the nice comment about my Son, We have some challenges, but he has achieved so much and we hope that will continue.

  13. Such an interesting, honest and heartfelt post. I’m really glad I found your blog x

  14. Pink chick says:

    We have just made an appointment with our GP to discuss our 13yr old son. Found it very moving reading your account but also really helpful in recognising how I am likely to feel following a diagnosis. Great preparation for us. Thankyou.

    • Aww I hope your GP is supportive. Everyone’s emotions are different, but i’m glad this has been of some help. If you want to, please come back as there is a huge on-line community of people who are going through or have been through the process of getting diagnoses of various autism spectrum conditions. Good luck with your journey.

  15. thanks for sharing such an emotion and fascinating post. I really hope if benefits someone else who maybe is at the beginning of their journey.
    I found it amazing that they could be persuaded to change their label so easily and shocking that the ‘professionals’ don’t think beyond the diagnosis they make and the language they attach.
    It’s an experience close to my own family and I think all your emotions are very valid and very natural.
    I am glad things although a challenge have worked for you. You are Very inspiring!

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