“When Aspies Attack!”

assumeThis post is partially written with tongue-firmly-in-cheek, because what comes next, despite the emotions and wrath conjured up in the blogger in question, I have found a combination of bemusing, ironic and humorous.  There are times you simply have to laugh things off.  Most often that is easy do, when you know that what is claimed by the other person has no basis in truth, it makes it simply not matter.  Especially when it’s forgettable.  And even when very wrong, I still respect someone’s right to their own opinion.

I don’t mean any of that in disrespect to said blogger, because I truly meant what I said in the comment I wrote which generated such indignance and wrath in her, that I mean her no ill-will.  (That still applies, despite her name-calling and entire misrepresentation of myself.)  That said, I term this post a ‘right of reply’ but one which is a secondary consideration to raising this issue as something happening out there in the blogosphere, which warrants discussion as a blog post in itself.  I guess that issue is the perils of the online world of autistics.

So, this (then) self-diagnosed blogger had written a post about self-diagnosis of Asperger’s, in which she criticised a certain ‘type’ of self-diagnosed individual whilst extolling the validity of her own self-diagnosis.  This claimed validity was mostly based on the fact that she believed she had researched well and was a qualified doctor, as if that automatically gave her prize claim to being correct.  (It transpires that she is a ‘primary care’ doctor and not a psychiatrist, psychologist or even apparently a doctor in an autism-related field).

My reply to her post on this topic, is screenshotted in prime place in her post to which this post is about (significantly, even above screenshotted Tweets from someone calling her names and making nasty, hateful comments which she also included in her post as if we had committed the same ‘offence’, which makes me think that my comment must have really touched a nerve), a post she devoted to accusing me of “trolling” her and sending her “hate mail”.  Can someone not be honest in the appropriate forum without being called a troll?

There are apparently online storms about self-diagnosis, I don’t socialise on Twitter or engage in that way online with the remainder of the autism community (I don’t have the time!), so I’m not involved in those, I just become vaguely aware on the periphery on rare occasions.  A respected researcher Dr Luke Beardon has written his own blog post here about the self-diagnosis debacle, if you want to read more about what’s going on however.  I only touch on this here, as the basis of what’s behind the topic of this blog post, rather than get side-tracked by discussing that whole subject.

Here then is my full comment in reply to this blogger (because she may moderate my comment out): http://media.wix.com/ugd/58c8f1_34e5db251c174416896eab706a42b5c7.pdf

Hell hath no fury like an Aspie that believes they have been scorned!  Sometimes you will hear autistics say “If only the world was full of just autistics!” but clearly, when you have people who struggle understanding the motivation of others, have impaired empathy in some areas and may be hypersensitive to perceived criticism (which can sometimes be from a lifetime of struggling to fit in with NTs) it will never be plain sailing.  Just add in the general potential to read the written word differently from how it was intended and it can be a veritable recipe for disaster.  Clearly this blogger felt very scorned.

I personally think a world full of autistics would be very problematic, rigid people, people who struggle socially, who can misunderstand (and clearly misrepresent sometimes too 😏!) wouldn’t work out too well.  Was I too blunt in the comment which offended this person?  Possibly, but true Aspie qualities of intense need for justice (don’t like hypocrisy) and honesty, can lead by the nose at times.  I won’t deny my own empathy has areas of impairment.  Blogging is commenting on life matters, it’s up to people what they blog about, just don’t forget you are online!  And disable your comments function already if you don’t want to listen to the opinions of others!  Otherwise you may as well just keep a personal diary!

So there it is – and the moral of this post?  Don’t automatically perceive someone’s comment as malicious or label it trolling if you are offended by it, that doesn’t mean it was written with malice intended.  Look at the logic of the content and keep emotions out of it before you respond.  Aspies usually tend to work logically.  Aspies have traits which can be used for good or bad (and anything in between) as written about here.  When an Aspie attacks another Aspie, does it help the autism community?  Well, let’s try to find a positive here, it helps any NTs reading, understand more about how Aspies tick and most of the time, they will get to read the insights of someone who is wired differently to them and maybe that helps autism awareness overall.

And now I will go back to laughing it all off.  Blogging will never be dull that’s for sure!

PS as said blogger has publicly questioned my own diagnosis, perhaps she’d like to look at my brain scans  I also have my access to my genome with plenty of autism markers, not to forget the heritability of autism with my children being autistic, or the fact that my diagnosis was confirmed by 3 separate professionals independently, then of course there is the fact that I have another condition related to autism, or my diagnosis of SPD, or the many tests I have taken which all score me for ASD and related aspects…I trust that’s reassuring enough to put paid to further uncertainty.

“Art of Autism” Blogger Awards 2017

shy-grinning-emoticonIf anyone has ever appreciated any of my blog posts please consider voting for me here: http://the-art-of-autism.com/vote-for-your-favorite-female-autistic-blogger-for-2017/. I’ve never been nominated for a bloggers award before!

I never really check blog follows statistics, but I know there are a few of you out there.  So if any of my posts have struck a chord with you, given you a helpful insight, been a topic for debate, or anything at all – I would appreciate your vote.

Some of my most popular blog posts have been:

But there is a wide variety on the blog, some of which have been topics I have never seen discussed elsewhere.

I’m normally very behind-the-scenes and ‘hide my light under a bushel’ and therefore my blog is (as far as I am aware), not one of the high profile ones, so I thought I’d break the habit and suggest nominating and voting for me as I’m currently in need of a boost!  It will hopefully also spread awareness of autistic issues from perspectives that may not be found elsewhere and if that helps even one person, it will be worth your vote.

Many thanks!

Asperger’s and “High-functioning” Autism – a Disability in Law?

IndecisiveI have been prompted to write this post, in response to recent opinions and comments I have come across, challenging whether Asperger’s syndrome is in fact a disability.  Most puzzled to hear this, since it is an autistic spectrum condition and my understanding has always been, that it most definitely is a disability, I set about investigating.

For the purposes of claiming Disability Living Allowance (DLA), DLA will only be awarded depending on the effects of a condition on the individual, as there is variance between people as to degree and severity of impact.  So clearly the DWP uses the legal definition of a disability as regards impact in coming to it’s decision.  But the DWP medical guidance for decision makers (adults) list, has Asperger’s and autism on it: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/321674/a-z-adult-medical-conditions-jun-14.pdf

According to the UK Government, the definition of a disability under the Equality Act 2010 is:

You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

What ‘substantial’ and ‘long-term’ mean

  • substantial’ is more than minor or trivial – eg it takes much longer than it usually would to complete a daily task like getting dressed

  • long-term’ means 12 months or more – eg a breathing condition that develops as a result of a lung infection

There are special rules about recurring or fluctuating conditions, for example, arthritis. For more details about the special rules download the ‘Equality Act Guidance’.

Here is guidance on the Equality Act 2010 from the Office of Disability Issues: http://www.equalityhumanrights.com/sites/default/files/documents/EqualityAct/odi_equality_act_guidance_may.pdf  It clearly states that:

“Only those disabled people who are defined as disabled in accordance with section 6 of the Act, and the associated Schedules and regulations made under that section, will be entitled to the protection that the Act provides to disabled people.”

So I checked out section 6 and that states:

“6 Disability

(1) A person (P) has a disability if—

(a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

(2) A reference to a disabled person is a reference to a person who has a disability.

(3) In relation to the protected characteristic of disability—

(a) a reference to a person who has a particular protected characteristic is a reference to a person who has a particular disability;
(b) a reference to persons who share a protected characteristic is a reference to persons who have the same disability.

(4) This Act (except Part 12 and section 190) applies in relation to a person who has had a disability as it applies in relation to a person who has the disability; accordingly (except in that Part and that section)—

(a) a reference (however expressed) to a person who has a disability includes a reference to a person who has had the disability, and
(b) a reference (however expressed) to a person who does not have a disability includes a reference to a person who has not had the disability.”

According to a legal adviser I communicated with recently, “there is dispute as to whether Asperger’s is a disability”.  To which my question is, by whom?  You will see shortly that this legal adviser knew something the rest of us don’t.  My research turned up the following, in addition to the above information:  http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/what-is-autism.aspx

“Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.”

So the NAS considers autism a disability, they are at least part-funded by the Government and are universally accepted as the national autism charity in the UK.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85011/disability.pdf see the section on “What is a Disability” on page 4, where autism is included.

A person receives a diagnosis of autism (including Asperger’s syndrome) because they have significant impairments that affect their day-to-day life, that’s why they are called diagnostic criteria.  By it’s very nature, autism means communication impairments.  When it’s a high-functioning autistic condition, having fluent speech makes the communication impairments no less disabling, struggling to understand humour, sarcasm, nuance, infer meaning, non-verbal body language, understand the intentions of others, literalness, all put the autistic person at a significant disadvantage and can cause all manner of difficulties.

The autistic brain is wired differently from the neurotypical brain.  There are over-connections in some areas and under-connections in others.  This means the individual processes things differently, in an atypical way.  That makes everything confusing and difficult, we are an a disadvantage – how is that not a disability?  How else do autistic people fall victim to “mate crime”, hate crime and criminal acts in general?

Many people with autism also have sensory problems, gastrointestinal problems, are more prone to epilepsy and many have a systemic connective tissue disorder known as Ehlers Danlos Syndrome – there is a strong link between EDS and autism.  We are also much more prone to sleep disorders because we have difficulties with melatonin production and processing.  Rigidity is part of autism, the need for routine and difficulty adapting to change or difference, which can have a very negative impact on functioning in day-to-day life, from the point of view of basic necessities as well as the expectations society places on us.  It is a complex condition.  The very fact that employment rates in autism are so poor, is indication enough of the impact it frequently has on the individual.  The fact that children with autism need additional support in education, some with occupational therapy and the rates of co-morbidity of additional conditions including ADHD, anxiety, depression etc. are so high, speaks for itself.  The fact that the person with Asperger’s or HFA is usually painfully aware of their differences and difficulties and the pressure society and we ourselves place on us, is an added difficulty.

Now we come to how a court of law will view a disability. After all, we have the Equality Act 2010 don’t we?  According to all the above, Asperger’s and autism are considered a disability and they definitely fit within the legal definition of the Equality Act.

When an Asperger’s friend had difficulties at work, they were disadvantaged in a way which amounted to discrimination by their employer.  They were put in a position of being compelled to take legal action, which sadly they lost.  Knowing the details of the situation, I felt this was very unjust.  It appeared that the reason they lost, was because the nature of Asperger’s as a disability, does not apply to the disabled overall, as a group.

“…the claimant had failed to establish group disadvantage for the purposes of section 19(2)(b)…. The reference to sharing the characteristic must be to the protected characteristic which in this case pursuant to Section 4 is disability. Despite observations to the contrary recited in the Equality and Human Rights Commission Code of Practice on Employment (2011), but applying the approach which would be adopted to other protected characteristics such as sex and race, the group disadvantage must be all disabled persons as opposed to a discrete group namely those suffering from Asperger’s Syndrome.”

I was dumbfounded by this, it’s bizarre.  By that criteria, no disabled person could claim disability discrimination in a court of law, because there is such a huge variety, nature or type of disability and everyone’s case is therefore different (either as an individual or as part of a “sub-group” of the disabled).  This makes a mockery of the law and renders the Equality Act 2010 effectively useless. It’s like saying if an employer removed a wheelchair ramp for people who are unable to walk and are wheelchair bound, knowing they had employees using wheelchairs who would be unable to access their place of employment, they didn’t discriminate against them because not all disabled people are in wheelchairs!  The friend in question is rightly countering with this:

http://www.legislation.gov.uk/ukpga/2010/15/section/19

19 Indirect discrimination

(1) A person (A) discriminates against another (B) if A applies to B a provision, criterion or practice which is discriminatory in relation to a relevant protected characteristic of B’s.

(2) For the purposes of subsection (1), a provision, criterion or practice is discriminatory in relation to a relevant protected characteristic of B’s if—

(a) A applies, or would apply, it to persons with whom B does not share the characteristic,
(b) it puts, or would put, persons with whom B shares the characteristic at a particular disadvantage when compared with persons with whom B does not share it,
(c) it puts, or would put, B at that disadvantage, and
(d) A cannot show it to be a proportionate means of achieving a legitimate aim.

(3) The relevant protected characteristics are—

    age;
    disability;
    gender reassignment;
    marriage and civil partnership;
    race;
    religion or belief;
    sex;
    sexual orientation.

So it’s very confusing that my friend lost their case, because according to section 6 of the Equality Act 2010 this friend should have been protected.

My friend was penalised for something directly resulting from their Asperger’s and they were not given reasonable adjustments by their employer either, even though their employer knew they had Asperger’s.  It’s even more evident when you consider that the Equality Act 2010 guidance also says this:

“Indirect disability discrimination happens when there is a rule, a policy or even a practice that applies to everyone but which particularly disadvantages people with a particular disability compared with people who do not have that disability, and it cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way. As with discrimination arising from a disability, it is necessary to strike a balance between the negative impact of rules or practices on some people and the reasons for applying them.  So you should consider whether there is any other way to meet your objectives that would not have a discriminatory effect.”

It sets a worrying precedent that a court of law came to this finding.  It gives carte blanche to employers to act as they want with complete disregard to the rights of the disabled, it places the rights of the disabled on very shaky ground.  Or are they now saying that only physical disabilities count?  Are invisible disabilities such as autism not as “important” as physical disabilities?  Because that’s discrimination in itself.

So with a diagnosis of ASC, you may have been to a special school, you may have had a statement of SEN, you may have needed all sorts of support growing up, you may live in supported housing and need support workers, you may claim DLA, you may be medicated for your difficulties and you may have co-morbid conditions causing you additional challenges, but no matter how much you are discriminated against, you cannot claim discrimination because disabled people as a group, do not all have the same disability or difficulties as you.  Well there is yet another law that isn’t worth the paper it’s printed on!

Some autistics like to say “I’m not disabled, I have a difference” and I do agree that the neurology we have is a difference, because autism is not a mental illness and I am also glad of the positive attributes it has given me.  But the way society is, the environment we have to exist in because there is no choice, makes life frequently disabling for most of us, and we’d be lying if we said there were not many disabling aspects of the condition – we would not have been diagnosed otherwise.  That’s not the same as saying you are ‘giving in’ to a disability and not trying to reach for goals or to make a success of your life.  But apparently, legally we are not disabled, despite what it says everywhere you check and we are unprotected in law.  So I ask – who is going to do something about this?  Why has a law been written which excludes those with Asperger’s and high-functioning autism, whilst pretending that it does not?

Connective Tissue Disorders & Their Correlation to Autism

plasticine man It seems for years that I have had problems with tiredness, from the age of seventeen came the bad lower back pain followed later by the aching knees and variety of other bodily pains.  You can live day-to-day with aches and pains that drag you down, but aren’t yet entirely debilitating enough to seek medical help for, you kind of think everyone probably has this issue.  Of course I did intermittently go to the GP with inexplicable tiredness and exhaustion over the years, sometimes blood tests were done, but they always came back with nothing of concern.  It wasn’t until very recently I found out about a connective tissue disorder known as Ehlers Danlos Syndrome and began researching, that it all started to add up.  I realised I had a huge host of the symptoms, one of which is many problems with the gastro-intestinal tract.

I knew that people with autism often have GI problems, scientists also know it, but no-one has been joining up the dots. Medicine and science often seem to identify symptoms and identify and treat them standalone, which of course never gets to the root of the problem, never finds out what is causing the symptoms, or doesn’t do so in a systemic way and match up seemingly disparate symptoms.  Two days ago, after being yet again entirely failed by the NHS (rheumatology department failing to diagnose me, not to mention the arrogant GP who was dismissive and highly reluctant to refer me in the first place and ensured the rheumatologist treated me with the level of disrespect and dismissiveness many of us have become accustomed to with the NHS), I was privately diagnosed with Ehlers Danlos Syndrome.  Before I received my diagnosis, I had researched the seemingly anecdotal connection between EDS and ASC.  ‘There must be some research out there’, I thought.  My youngest child was already diagnosed as hypermobile by our local OT and I can see clear signs of it in my oldest child, they are both on the autistic spectrum too, both conditions are genetic, so there had to be a connection. Sure enough, although the research seems to be still in its infancy, I found it:

1) “High-functioning autistic disorder with Ehlers-Danlos syndromehttp://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2011.02262.x/full

2) “Autism and Ehlers Danlos Syndrome” http://www.pubfacts.com/detail/1537777/Autism-and-Ehlers-Danlos-syndrome (download full paper from that link)

Here is another article on the effect of EDS on the brain (which also refers to autism, along with proprioception issues and sensory difficulties):
3) “Brain structure and joint hypermobility: relevance to the expression of psychiatric symptoms” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/
Here is an article which discusses the “Underdiagnosed” condition of EDS :
4) (see 5.5 Psychiatric Features) “Ehlers-Danlos Syndrome, Hypermobility Type: An Underdiagnosed Hereditary Connective Tissue Disorder with Mucocutaneous, Articular, and Systemic Manifestations” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/
I have read a lot of anecdotal evidence about families with ASC and EDS – isn’t it time science and medicine properly joined up the dots?  I mean even in the article above (3), they state “Differences in the structural integrity of temporal and parietal cortices may underlie wider behavioural phenotypical expression of hypermobility: abnormalities in superior temporal cortex are also seen in autism.11 so they aren’t actually making a strong enough link, they seem to think the two conditions share the same brain changes but not that they are intertwined in some way and that perhaps EDS is even causative of ASC.  So basically there is an elephant in the room…joining the dots elephant…and no-one is bothering to properly join the dots.

It’s high time that science caught up, if we understand connective tissue disorders we may get to understand autism better and perhaps, genes in common can be identified which could lead to understanding causation. Thought for the day:

“For every effect there is a root cause.  Find and address the root cause rather than try to fix the effect, as there is no end to the latter.”

~ Celestine Chua

Edited 28.5.16 to add:

Two genes which may connect the two conditions are ADAMTS2 and TNXB.  Seen on Pinterest –

Pinterest EDS and ASD genes