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The S word (stigma).

8/4/2016

4 Comments

 

I offer a short talks about autism that are followed by a Q & A session.  I try to be relevant to the specific audience. However I always try to convey how helpful it is to society at large, as well as to autistic people, if autism is considered an ordinary part of human neuro-diversity, a diversity which by its nature enriches and expands human experience and possibilities.

Recently I discovered I had failed in this when in the final minutes of the session addressing support workers I was asked, or rather told, "The idea of autism as a signpost is all very well, but it isn't really helpful to label people.  My friend has a thirty something son and he was diagnosed with autism but she has never told him, she just puts in place what is necessary to help him deal with it. Surely that is the kindest way, there is no benefit in dividing people up and labelling them, he's just a human being with needs"

This statement illustrates the damage caused by the perception of autism as a negative label rather than a simply a useful descriptive term.  An analogy would be that if you had a child who was extra sensitive to the sun, who got sunburn whenever the sun came out, it would not make sense to just coat them with sunscreen, without explaining to them why you were doing it. If you did not tell  them  about their sensitivity  to the sun and the consequent need to be careful and to apply sunscreen when they went out they would only be protected when you are around.  This would not enable them to understand and look after themselves and achieve independence.

Of course there is no stigma attached to having extra- sensitive skin, so it is unlikely that this information would be kept from a child. The issue here is not naming (rebranded in the comment above as "labelling") the condition, it is the stigma attached to that condition.  I have recently seen several examples of how this stigma affects ordinary autistic people and their families.

87  year old Edith came all the way from Australia to see me because she read my article about autism and therapy and thinks I will understand her. Edith is proud that someone she met in a café didn’t think she was autistic.  

Samantha is a mental health worker, she has an autistic daughter, she tells me she has not yet watched “The A word” because it might upset her husband who has not accepted he has an autistic child.

Emma consulted me about her son who has a Master’s degree, but now sits in his room with various ailments he won’t see a doctor about.  Emma has long suspected her son might “have Asperger’s” but never mentioned it to him “because he was managing”

What these very different people have in common is that the stigma attached to autism is preventing them from engaging in ways that could enable an autistic person to flourish.
I think stigma often (but not always) the most significant factor getting in the way of autistic people having the opportunity to flourish.  A simple thing anyone can do to help autistic people  is address this stigma, and accept autism as an ordinary part of daily life rather than an extraordinary label that needs to be kept hidden.
4 Comments
Planet Autism
9/4/2016 10:51:14 am

"The idea of autism as a signpost is all very well, but it isn't really helpful to label people. My friend has a thirty something son and he was diagnosed with autism but she has never told him, she just puts in place what is necessary to help him deal with it. Surely that is the kindest way, there is no benefit in dividing people up and labelling them, he's just a human being with needs"

This appalls me. But not quite for the same reason it may do you.

I used to belong to a well-known Asperger's forum, the amount of people on there who said that their parents had not told them they had autism and who really resented their parents, sometimes resenting in estrangement from them, was significant.

I find parents who do this really selfish. They are thinking of themselves, not their child. It's not their right to withhold something so huge from someone who has a right to know.

People were saying things like "they took away my right to understand myself and know why I felt so different". Imagine the trauma that can cause someone.

Until discovered autism, I had no idea why people would say I was 'difficult', why relationships with others were so complicated and stress-inducing, why people were so confusing. So I reverted to the default believe that I was bad, I was everything negative they said I was. So not telling your child they are autistic, is letting them sink into that quagmire without giving them a rope.

Can you imagine an autistic adult having a meltdown in front of peers and feeling like a freak with no explanation? Nothing to explain the reason to others, who may then label them as having anger management issues or a personality disorder etc.

They are also putting their adult child at risk of misdiagnosis, when they seek mental health support or potentially even the news being broken to them by an unknowing psychologist/psychiatrists who says "well of course you know your autism is causing this".

They are also denied any autism-related services for their needs, parents are not around forever and what happens when they are gone and there is nobody there to meet the needs without a 'label'?

What about legally protected characteristics and reasonable adjustments? How can they ask for those in employment (assuming they can achieve employment with the rates of unemployment among autistics being so high) without knowledge of their diagnosis? It is potentially setting them up to fail.

The pressure someone may feel from wondering why their sensory problems seem to be different to everyone else's tolerance levels and how they will then pressure themselves to conform, resulting in stress overload and burnout.

Here is an article on the negative impact of late diagnosis, imagine if you don't know of your diagnosis how this will still apply: http://www.iancommunity.org/cs/articles/very_late_diagnosis_of_asperger_syndrome

The epigenetic basis of autism, means that having autism is associated with other health problems, including heart disease, cancer, metabolic disease etc. (http://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0153329) and a parent withholding their child's diagnostic information may be condemning them to insufficient health monitoring resulting in increased morbidity.

http://medicalxpress.com/news/2016-04-analysis-autism-associated-genes-involvement-key.html

"Detailed analysis of autism-associated genes finds involvement in key pathways, processes

"Our pathway network analysis is the first bioinformatics study in autism to connect the dots of brain and body - of autism and accompanying medical conditions, of autism and vulnerability to environmental stress - in one investigation," says Ya Wen, PhD, a research fellow in the Department of Neurology at MGH and MassGeneral Hospital for Children (MGHfC) and lead author of the study published in the open-access journal PLOS One."

There have recently been many media stories of early deaths in autistics, everybody has the right to know that they are autistic and what caused their autism, precisely because of the associated health issues as well as their sense of wellbeing, knowledge is power and that is what enables people to make the best of their lives and overcome.

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Planet Autism
9/4/2016 10:56:10 am

"Samantha is a mental health worker, she has an autistic daughter, she tells me she has not yet watched “The A word” because it might upset her husband who has not accepted he has an autistic child."

There is anecdotally, a high proportion of fathers who reject their child's autism diagnosis too and this really concerns me. It is ego-based ("I couldn't produce faulty progeny") and also very selfish. It causes mothers much stress as they are trying to support their child, manage the other parent's refusal to use autism support techniques causing the child further stress (parents need to be on the same page) and may even prevent diagnosis. It's probably worth a whole blog post.

Reply
Caroline
9/4/2016 04:55:05 pm

Thanks sharing your thoughts. I do however think that parents do the best they can for their children, and it is true that being known as autistic can affect peoples attitudes to an individual. This is what I am trying to address - if we can undermine the stigma, there will be no reason for parents to not tell their children they are autistic.

Reply
Planet Autism
9/4/2016 05:38:49 pm

Most parents mean well. But they are sometimes basing their fears, expectations etc. on their own perceptions. A neurotypical parent will never know what it's like to be autistic, so they will never share the same internal experience of autism. They cannot therefore know the impact of their decision to withhold either access to assessment/diagnosis or revelation of diagnosis.

Look at it this way, someone will be the way they are regardless of the diagnosis being shared. So any perceived shortcomings or differences by their NT peers will still be present and they will still be judged or accepted for them. The more people hide away their diagnoses, the more the problem is perpetuated.

If everyone disclosed, NT peers would have to recognise and accept. Something that is hidden away from fear is allowing society to maintain stigma and prejudices.

The biggest problem is lack of autism awareness. If understanding was widespread autistics would have nothing to be afraid of.

Ironically, there seems to be a fad to have Asperger's, going by what's in the media (Sheldon et al) so it surprises me that stigma still exists. Perhaps more of it is in parents' minds than they realise. Perhaps in some cases, it is their own prejudice.

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