The Child Who Fell From The Sky: Invisible Disabilities

“If language naturally evolves to serve the needs of tiny rodents with tiny rodent brains, then what’s unique about language isn’t the brilliant humans who invented it to communicate high-level abstract thoughts. What’s unique about language is that the creatures who develop it are highly vulnerable to being eaten.” — Temple Grandin

Wallace: After everything she told me, and checking on your excellent record in college, I’m wondering why you choose to drive a taxi for a living.
Donald Morton: At my interview with IBM after I graduated college, they asked me what my plans were, and I said, “Probably go to McDonalds for a 12-piece McNugget and two cheeseburgers, and then do my laundry.”
Wallace: Did they laugh, at least? – Mozart and the Whale, Biography & Autobiography by Jerry and Mary Newport (both have Asperger’s and Mary is also an autistic savant)

♦ ♦ ♦ ♦ ♦ ♦ ♦ ♦

Isaac Asimov, John Denver, Jim Henson, Alfred Hitchcock, Howard Hughes, Andy Kaufman US comedian, subject of the film Man on the Moon , Charles Schulz creator of Peanuts and Charlie Brown, Bill Gates, Dr. Temple Grandin doctor of animal science.

A list of well known identities, seemingly a random list – but not so as these people all have something in common and this is Asperger’s Syndrome.

Very often our perception and judgment of a person is based on what is visible or apparent to us – what we can readily notice.

For many people, the word disabled conjures up images of physical disabilities of the sort which involves visible signs. These seem to be the easiest to understand, are the ones that are most prevalent in the media and therefore are the ones that people are most exposed to. There is also a spectrum of visibility with some disabilities being more obvious than others. Asperger’s Syndrome is but one of these where a person’s disability is not readily obvious, nor might even be discernible to those who might be aware of the condition.

It is human nature to believe that all are “just like me” and so it is assumed that a person does not have a disability until proven otherwise.

“Seeing is believing” is just as true when it comes to disabilities. If your disability can’t be seen, there will be some who think that it simply isn’t there. Some may even come to the conclusion that the person is looking for special treatment or that they want to “get out of” something. People have been told that their assistance dogs are fake, that they do not deserve handicapped parking, or that they do not qualify for help at school, just because they don’t fit the stereotype.

Disability is a matter of perception and ideally, I think, it’s just about remembering that people are different from each other, and that differences should be acknowledged and appreciated.

Note: Why the odd title. The reason is that one name that Aspies like to call themselves is The Earthbound Alien.

31 comments on “The Child Who Fell From The Sky: Invisible Disabilities

  1. Another aspect of the lives of people with disabilities that goes unseen is the quiet heroism of their families. Often the arrival of a child who is different means a total turnaround in the life and aspirations of at least one parent, now needed full time for physical care as well as emotional support in which siblings and others play their part. One senses that when they get it right these families are strengthened and blessed, but it is no easy road reaching that understanding.

  2. Min, thank you for this insightful piece.
    Looking at the names of famous people who have Aspergers, it seems to me that “difference” is no bad thing.
    Tolerance and understanding is often in short supply for others with a disability which is not particularly obvious, as you say “seeing is believing”.
    There might be someone we know who is simply recognised as a”nerd”, a “brainy type”, someone who gives lengthy answers to a simple comment, might appear to be a little clumsy, physically or socially, and that’s ok; but the chances of being ridiculed or criticised are fairly high!
    The person may have Aspergers, or not, but we should appreciate each individual just as they are.
    There are scores of disabilities which are not obvious to a casual observer, and the attitudes of some in car parks and shops can be quite vicious.

    patriciawa, your comment about carers is very accurate. Often the carer’s life is turned upside down and changes course forever in many ways….
    “one senses that when they get it right these families are strengthened and blessed, but it’s no easy road reaching that understanding.” Very true, and other qualities they didn’t know they possessed become evident.

  3. Patricia, my theory with my crew was to encourage their strengths and what they simply weren’t all that good at..well, slowly lovingly and gently does it. Amazing what becoming Victorian judo champion did for son when he was continuously getting into trouble for things that he couldn’t understand – what was happening is that as an Aspie he was missing the visual cues, and sarcasm was simply nonsensical to him. Sarcasm especially because it presents contrary ‘messages’ saying one thing and meaning another.

  4. Pip, thank you. That’s exactly the message that I was hoping readers would gain..that “difference” is no bad thing. Most Asperger’s wouldn’t change a thing about themselves because then they would be a different person.

  5. Min, a topic close to home. My oldest son has Aspergers and it is thought by many that I do too. But I won’t go into that now.

    Patricia raised the point about carers. Their needs are something that has been recognised by the current government, which was totally ignored by Howard. For example, Howard expected carers to meet the same job search activities as most unemployed people, whereas the current government understands that these people are committed to other demanding responsibilities.

  6. Migs, Asperger’s is an extremely difficult thing to diagnose with only a few specialists currently with sufficient expertise in Australia. One of these is Dr. Tony Attwood who I was fortunate enough to work in conjunction with when I was a disability advocate.

    Although Asperger’s is a spectrum disorder there are certain aspects which run true for most, heightened awareness which one might call intuition, some have other heightened sensitivities such to loud noises and some lighting. My eldest has the sensitivity to lighting also called scotopic sensitivity syndrome – fluorescent lighting plays havoc. Another one is a heightened sense of justice which seems to be one of the most common aspects. And from the list provided of other Asperger’s people another one is all pervasive unusual interests.

  7. http://www.theage.com.au/opinion/politics/a-vicious-war-on-a-soft-target-20110417-1djo1.html

    Hence the easy, populist opportunities of a welfare reform debate. Sadly, there are always going to be votes in bagging ”dole bludgers”, the same theme so beloved by sleazy TV current affairs programs that seem to ”expose” yet another case of egregious welfare fraud every few days.

    Australians love a scapegoat. Who could be safer to pick on than someone we perceive to be getting something for nothing?

  8. Min, having one child with a severe language disorder and a low IQ and another who is mildly retarded, I can certainly relate to what you have said in this post.

    One of the worst things for carers of people with “hidden” disabilities like Asperger’s, language disorders and the like, is that there is still precious little in the way of support for the sufferer or their families.

    Their trauma and distress is usually hidden as well; the attitude seems to be that because you can’t “see” the disability, it’s minor and you should just get on with it.

    And if the disability is uncommon and/or has a low profile, it’s exponentially more difficult for all concerned.

    When son #2 was diagnosed, there was no support such as carer’s payment, because it wasn’t even recognised as a disability. Great stuff for a language-based society.

    And while a child with a language disorder doesn’t have the same medical and specialist equipment needs as sufferers of physical disabilities, there is still a financial cost and an enormous emotional burden on families.

    My oldest son still carries the emotional scars from relentless teasing by primary school peers and lacks confidence in himself.

    He felt that #2 was “putting it on” to get more attention and to excuse his behaviour, which led to #1 getting into trouble at primary school and home. Had there been some sort of support base, I feel that his path would have been a lot smoother.

    My daughter was more fortunate, being 2½ years older, extremely articulate and quite scary in her ability to verbally put any tormenters in their box.

    And she has said that she didn’t cop nearly as much shite as my poor oldest boy, who was much closer in age to #2 than she was.

    (I suspect she wasn’t too scrupulous about a spot of physical persuasion, as well.)

    If #2 had had an “acceptable” disability, I think there would have been a lot more understanding and support from my two oldest children’s peers and the community in general.

    However, there is precious little understanding when the only obvious and concrete manifestation of the disability is in the behaviour of the disabled person-weird gestures, talking loudly to oneself, utter inability to read body language, social ineptitude, gigantic tantrums and other “inappropriate” (ie socialised) behaviours.

    My husband lost count of the times he was told that a good thrashing was all that was needed.

    The only person who had an inkling, was a parent whose only son had finally been diagnosed with bipolar disorder after 20+ years struggling to find an explanation for his behaviour. That immediately explained the drug taking and other behaviours to us at least.

    Unfortunately, most of the community had little sympathy for the young man or his family nor even a basic understanding of the disorder and its ramifications. Tragic, imo.

  9. Sorry for rambling on, but I really loved Donald Morton’s anecdote. If I’d had a mouthful of tea, I couldn’t have guaranteed the integrity of the keyboard!

  10. Jane, you are absolutely brilliant and a very extra special hug heading your way. Yes, been there done that. Son chronic asthmatic on a nebuliser 3 times a day and diagnosed as hyperactive with mild autistic tendencies long before the name Asperger’s was even heard of by specialists in Australia. Likewise he was labelled a ‘behaviour problem’ which he wasn’t because he never got into fights, never teased others, but what he did do was that he politely requested teachers to explain themselves..and they didn’t like it.

    I ended up taking him out of school after yr 8 as I feared for his life, that all of the negativity would end up with him taking his own life. I saw the signs and this was a justifiable fear. The next two years I home schooled him which was no easy task when dealing with an Asperger’s whose main problem was auditory input deficit (hears sometimes but doesn’t always)..just so that he would have his Yr 10 certificate, just so that he would have some hope of a career.

    Yes Donald Morton is so typical Aspie..takes the question literally. Believe me, and I have 3 of the darlin’s apart from being one myself of course..we can be cute at times 🙂

  11. Min, you absolute champion! You should be Mum of the Year, every year.

    It’s very hard to get people to understand that kids with Aspergers’, language disorders and similar disorders aren’t being provocative, obstructive, difficult or smart arses.

    They can’t process language the way “normal” people do, is all. They hear what’s said OK, but the translation gets scrambled.

    As you’ve remarked before, they are often an irony, inference and humour free zone and it makes teenage years particularly difficult.

    We were lucky in that #2 was diagnosed at 2½ by the wonderful Richard Cockington, who set up the Child Development Unit in Adelaide, so thanks to him speech therapy was commenced early.

    It may have been serendipity, because he started to talk early and it just suddenly switched off, so I took him to our GP for a hearing test and to be on the safe side, referred us to the Children’s Hospital and ultimately Dr Cockington who was in the process of setting up the CDU! And the first time I heard the term Language Disorder.

    I had a sneaking suspicion he may have been autitstic because of behaviours like hand flapping, tip-toe walking, head banging etc.

    In the only contact I’ve had with other parents of language disordered children, the most common complaint was late diagnosis-some as late as 7years old!

    He still has difficulty with umbrella terms and doesn’t know the names of stuff. Only recently, I found out that he didn’t know the label “table”.

    However, as with your lot, he and #3 have a lot to be proud of. He has his Ps and with help from me, hopefully will pass the hazard perception test, get his P2s and thence his full licence.

    #3 has had his full licence for 18 months; all his own initiative and hard work. And he nabbed himself a traineeship at the local tyre place, once again down to his persistence and hard work. And he’s just turned 22.

    I couldn’t be prouder of both of them.

    And you and Jeff must be bursting with pride at your lot’s achievements!

  12. Jane, I suspect that I was already 1/2 way to understanding son especially (he’s the only one with auditory input deficit) because as I’ve mentioned before I’m hearing impaired with moderate conductive hearing loss. Know what it’s like to ‘not hear’…well of course I do.

    Know what it’s like to only be able hear ‘sometimes’, yes because it’s exactly-the-same for hearing impaired people. I can hear quite well under particular circumstances – background noise, the tonal quality of a person’s voice and the person’s body language.

    I can understand maybe 4 words in 12 in a normal conversation and use a combination of ‘reading’ people’s expressions and with a bit of luck I catch the Key Words and so can understand the conversation. Otherwise I do my noddies 🙂

    That’s exactly it Jane, ‘hears but doesn’t hear’. My crew didn’t have the OCD thing but then it manifests in different ways such as having to play the same song over and over and over. Youngest must have played the same song 25,000 times, she also sang the same line of a different song for maybe..3 years.. I kid you not.

    But more than anything people are just people and so what if we’re a wee bit different to the others, differences are there to be appreciated.

  13. Jane re “It’s very hard to get people to understand that kids with Aspergers’, language disorders and similar disorders aren’t being provocative, obstructive, difficult or smart arses.”

    For some inexplicable reason, not a clue why but one day I found myself in the job of Disability Advocate and from all the kids that I was advocate for (including a HREOC case taken to arbitration..no small bikkies) I love this line..

    P* age 14yrs (one of the nicest kids): Ms. I don’t know how to write a geography assignment.

    Geography teacher: You write it as you would talk to me.

    P*: But I wouldn’t talk to you. [Absolute true story].

    And why do kids with Asperger’s and other input difficulties get into so much strife at school – they take everything literally. But the teachers do NOT understand this, and if it’s explained to them they, the teachers think that you’re just making up excuses for some smart-arse kid. And it’s not a little bit funny if you have to live with it for years..and you have to stand up in front of arbitration trying to argue with some snotty nosed principal at some snotty nosed school who thinks that it’s far far far too too difficult to provide so much as a scrap of paper in size 14 font for a kid with a visual impairment…

    Rant completed..(no promises tho)…

  14. Min, even though #2 had been diagnosed before he started kindy, his Reception teacher told the kindy staff that she was sure that the problem was poor parenting.

    So, even when you have a diagnosis in black and white, people still think the kid just needs a good thrashing to fix them, or that it’s simply a matter of crap parents.

    If I were a snotty-nosed principal having to front you, I’d mind my ps & qs. I reckon you would be a force of nature in those circumstances. I hope you tore strips off him/her.

  15. Jane, the ignorance even from so-called professionals is abysmal at times. The best explanation that I could give to teachers was that the brain was wired differently and no amount of ‘parenting skills’ which as you say usually means something like ‘that kid could do with a good kick up the backside/clip behind the ears’ is ever going to change that.

    Is a good kick up the backside going to change a person’s eye-color? Some teachers would look at me perplexed, What on earth does she mean, I could see them thinking…But, but this is different, this is a ‘behaviour problem’.

    But of course it isn’t, it’s the way a person is born. Get over it folks!!!!!

  16. Jane, those were touching stories and I can only admire from a distance your courage and determination.

    I too have a son with a string of mental illnesses, one being Aspergers. I can only begin to imagine the difficulty his mother has with him. She laments, btw, that from the time he was 18 the support services were no longer available. In Adelaide support services are freely available to minors but they dry up when reaching adulthood.

  17. Migs, unfortunately there seems to be an assumption that adults with disabilities don’t need support, that they will have “grown out of” their disability by some miracle.

    In fact, support for adults is every bit as important, possibly more so especially if they have left home. It’s hard enough for people without disabilities to negotiate the pitfalls of striking out on their own, but when you factor in a disability the difficulty increases exponentially.

    In general, people with disabilities don’t have well paid jobs (high functioning disabled excepted) and, in my experience, are not great at managing their money.

    To be honest, I don’t see #2 living completely independently and it’s a source of nagging worry for us. What will become of my boys when we’re not here to provide the home comforts and protection, when “What’s for tea?” is met with silence?

    I suppose I’m being overprotective and they’ll manage, but I do worry about people taking advantage of them and hurting them.

    Of course you feel that for your children who are not disabled, but disabled kids are more vulnerable and don’t have the mental agility to fight back.

    We do have supported living and #2 works in the supported employment service, here.

    I do feel sorry for families living in large communities, however where they and their kids would be lucky to know their next door neighbours, let alone in the wider community. That must be a real worry.

  18. Jane, I would say yes one of the biggest concerns is people taking advantage and this does include some high functioning ones as well. I found with 2 of my crew that the best that can be done is try to ease them into the idea that people aren’t always as they seem and hope like hell that they have at least one good friend who is sincere and genuine and not just after what they can get.

    I’m not sure how old your boys are but here is one from when son was 23yrs old. J* could never smile for the camera for the reason that he was completely unable to make a facial expression that he wasn’t feeling. This isn’t a matter of ‘didn’t want to’, this is a matter of an inability to ‘pretend’ emotions. One day he said Look see what I can do..and yes he had learnt to smile on cue, such as when people say smile for the camera. He was so very proud of himself.

  19. Aspies: deception-detection intact and relatively immune to socially convenient altercastings and manipulations. They’d probably make for passable evolutionary bullwarks against predatory sociopaths eating the hearts and brains of neurotypicals.

  20. I heard on the radio this morning that the centrepiece of the budget will be Mental Health

    Roxon confirms mental health package
    http://www.abc.net.au/news/stories/2011/04/21/3198081.htm
    While the government is giving bits of budget information the press are all writing about Abbott’s mental health budget. What the?
    Reading and learning of the experiences and battles of Jane and Min, and their children, it seems to me that neither the Government nor the Opposition actually get it.
    Both parties appear to be saying to whoever is ready and waiting to criticise any social well fare assistance, we’ll do the right thing but we’ll make them earn it. That isn’t always an option.
    I wonder why Tony Abbott didn’t try to do something constructive while he was the Health Minister, and there were rivers of gold for tax breaks for Howard’s battlers; and what could have been achieved now if the MRRT legislation hadn’t been stymied by Abbott and his mining company mates.

  21. Pip, it is designed thus way so that Abbott can say that the government stole his policy. It might backfire though that he wouldn’t be able to criticize it if it is similar to his.

  22. Surely if common sense prevailed (which it seems that it doesn’t) the MSM would be more interested in forthcoming action in this regard than something from Tony Abbott.

    After all he Abbott is not in government and although I would be interested in hearing the opposition’s opinion after we know exactly what the government is proposing, why bother with something that is unlikely to ever happen..that is, Abbott’s mental health policy as I am certain that this would be dropped straight to the bottom of the priority list should he ever gain government.

  23. The Abbott mental health “budget” isn’t funded, but it’s getting so much air play, and when it fizzles out the media will say absolutely nothing.

    The real Health Minister said today:

    “I think the cheers for the Liberal Party might soon turn to tears when it is revealed that Mr Abbott hasn’t got any funding for this package, and doesn’t intend to tell the community for the next two years how he would actually fund it if he were in government,” she said.

    Well said.

  24. I wonder why Tony Abbott didn’t try to do something constructive while he was the Health Minister, and there were rivers of gold for tax breaks for Howard’s battlers; and what could have been achieved now if the MRRT legislation hadn’t been stymied by Abbott and his mining company mates.

    Pip, we may well ask why Smuggles did SFA for people with mental health issues while he was Health Minister; I want to know why the MSM haven’t raised that very same question.

    He has no empathy with anyone who has health problems exemplified by his dreadful treatment of Bernie Banton and Michael Brogden.

  25. Jane, I’ve been back here a few times just to take in what you and Min and all the other parents of Aspies have to deal with and you have my utmost admiration.
    Years ago my daughter was absolutley besotted with the Irish group Boyzone who are no longer young boys but married with children. One of them, Keith Duffy has a daughter who is autistic and he and others founded Irish Autism Action and he does a lot of fund-raising for the cause.
    In his north if the Liffey accent he says

    “If I can use my fame to kick the a***s of people in power to get services for children in all postal codes rather than just some then I will.

    “My profile’s high at the moment because of the Boyzone reunion so I’m going to exploit that to help the NAS.

    ‘We’ve put in place early intervention for diagnosis and one to one applied behavioural analysis.

    “Early diagnosis is essential for the child but trying to get that through the NHS or here in Ireland is almost impossible. It can take anything from 18 to 24 months which are crucial months in that child’s development – you will never get them back.”

    From what you and Min have said we need a ‘Keith’ here with the wherewithal to attract the assistance so badly needed.

  26. Pip, a bit of the problem especially in Australia is that so few specialists have any sort of expertise in the field and so what you end up with is all sorts of diagnoses – parenting problems, personality disorders and mental health issues.

    I would highly recommend that any parent who has a child who is getting into trouble for things that seem unfathomable to them to consider Asperger’s, and especially if there is already a diagnosis of ADHD – many ADHD kids have been incorrectly diagnosed especially by GPs and the proof of this is WHY the drugs do-not-work on some people…but that’s another story.

    Step 1 is to contact the offices of Dr. Tony Attwood who has a website at: http://www.tonyattwood.com.au/. For those unable to travel to Brisbane then Tony can provide the names of specialists with expertise in this field. A ye olde garden variety psychiatrist or clinical psychologist simply does not have sufficient expertise to be able to provide an accurate diagnosis.

    However, having said that there is now assistance in schools at least in NSW but as always this is very much dependent upon the will of the individual school principal, who are often not well versed in the issue of hidden disabilities.

  27. From: http://www.smh.com.au/lifestyle/wellbeing/aldi-abandons-colour-additives-20110425-1du5h.html

    It must have been known for at least 20 years that artificial colourings create havoc with some people with autism spectrum disorders and ADHD. But of course the professionals plus those who knew from their own observations were quickly fobbed off as just crazy alternative lifestylers..especially by those with vested interests in keeping these additives in foods. But here it is…

    THE two big supermarket chains will continue to sell food with artificial colours, even though Aldi will remove all products with the additives from its shelves as of Thursday.

    The removal of artificial colours, including six linked to hyperactivity in children, from foods is the latest development in the supermarket wars.

    And especially…

    The decision was motivated by the results of a government-funded British study that found young children who consumed mixtures of some artificial food colours, including sunset yellow (110), quinoline yellow (104), carmoisine (122), allura red (129), ponceau 4R (124) and tartrazine (102), and the preservative sodium benzoate, had increased levels of hyperactivity.

    That is these food colourings cause hyperactivity in otherwise normal children. Sadly these days many health professionals seem to think that it’s easier to provide drugs than to expect people to make lifestyle changes such as the avoidance of artificial flavourings and colourings.

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