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Saturday, April 12, 2014

Autism Community Split in Four, Says NIMH Chief

I found this an interesting perspective and can't help feel it's correct in many ways. There's no doubt for many people the type of autism your child has influences your perspective on it. I do believe because I'm certain my kids have a purely genetic ASC, it's easier for me to embrace the autism as difference, neuro-diverse position.  I also know if my two were more severely affected by autism and had co related issues, such as GI problems I would be more open to the idea of an environmental 'insult'. I think exploration of the differing autism sub types will help lead to better targeted support.

Autism Community Split in Four, Says NIMH Chief | Child Mind Institute

Monday, April 7, 2014

Seems There's a Need for Autism Awareness After All.

Have a read of this before I go on --   http://www.essentialbaby.com.au/baby/baby-sleep/when-sleep-training-goes-wrong-20140327-35jvd.html

That ^^^ article enraged me to the point of providing a twitter rebuff to the author.  I have to get pretty cross about something to bother getting so confrontational these days. The author is a very popular 'expert' in baby sleep and feeding issues, who appears to make a living off the insecurities of new parents. I could walk past that alone given I'm sure she provides some measure of comfort and information to the average family dealing with the typical early hurdles around feeding and sleep. But based on the above article she is waaayyyy out of her depth when it comes to more complex presentations.

The child in the article struggled with sleep from birth, usual sleep 'training' techniques produced no change. As he aged other difficulties emerged such as anxiety, OCD like behaviours (aka repetitive behaviours?) and problems that apparently are creating stress for the whole family….sound familiar? Maybe it doesn't ring bells for many families but it sure does for me and many others in the autism community. Harri was very similar sleep wise to that child. I know now it was probably related to his difficulties processing all the sensory stimulation in tandem with a naturally overactive brain. It meant from the moment he was born he couldn't sleep well. He needed movement, as in someone rocking or swinging him to drift off, and even then sleep lasted only a short time. He was my third kid, I knew all the sleep teaching tricks, but they wouldn't work for him.  Just like the above story.

I can't know for sure what's going on for the child Pinky describes, but there's some pretty strong indicators that an assessment for ADHD, ASD or sensory processing issues would be in order.  I think it's far more likely his problems are related to a neurogical issue rather than psychological trauma because they left him to cry for a few weeks.

Just as infuriating is the guilt trip in the implication of harm the parents caused, albeit inadvertently. Anyone who's lived with a child who doesn't sleep well for a long period despite all methods, including medications, being tried knows leaving a child to cry is not always the worst option. It can be the only choice that keeps the baby safe and family members sane as they take a break from the relentless toll of broken sleep.  Crying it out finally worked for us once Harri was old enough to understand the routines and expectations, when he was around eighteen months. My personal opinon is that not responding to my son's crying at night thereby not reinforcing his waking was the only way he learnt to put himself back to sleep. It was agonising at the time, but so was the lack of sleep.

For me the worst aspect of this shitty article is that someone professing expertise in the area of babyhood and sleep techniques knows so little about children who have genuine neurological challenges that make good sleep next to impossible. If she does know anything about this topic she's careful to stay on message about her own brand of sleep management to the possible detriment of those parents who should be seeking help elsewhere, starting with a developmental paediatrician. 

Saturday, April 5, 2014

A New One.

Thanks to my buddy LisaMarie Domican over at  http://hammie-hammiesays.blogspot.com.au (she's also the creator of Grace App) I became aware of this Ireland based resource recently. I'm sharing it here as although it has an Irish focus, much of the information is useful for anyone interested in autism. Its creator, Adam Harris, is on the spectrum, and provides a welcoming space for all. Well worth a look.

http://www.asiam.ie

Wednesday, April 2, 2014

Great Resources.

I don't tend to do the April Autism Awareness stuff, as I'm quite aware of autism thanks very much, as are those who read this blog. I do sometimes use this month as an opportunity to promote awesome autistic people aside from my kids, like I did here - http://sharon-theawfultruth.blogspot.com.au/2011/04/great-moments-from-spectrum.html 
some years back.
But this year I'm more focussed on the difficulties that can come with autism, both personally and more broadly. As my last post on wandering attests, autism has challenges, along with the many fascinating and wonderful attributes it can lend. To that end I'm choosing to focus on sharing resources that I hope will help people struggling with the hard stuff during April.

One of the best practical resources, particularly for those using visuals as teaching and communication aides or doing ABA Ive discovered recently is this wonderful website, http://therapics.org, by a mum who knows her stuff. You can find Phillippa on Facebook as well.

Sunday, March 30, 2014

April 1st - Day of Remembrance.

Remembering all those precious lives lost to wandering, and those left behind to mourn and miss them.
And to parents and carers who live with the daily anxiety wandering brings. You're in my thoughts often. 

Tuesday, March 18, 2014

The Challenge of Honesty and Respect in Autism Narratives.

The other day I was listening to a radio interview with disability advocate, Sally Richards. She's the mum of a severely disabled adult son, and along with a few other parents developed an independent accommodation option for disabled people known as an intentional community. You can hear the interview with explanation of the community concept below.

http://mpegmedia.abc.net.au/local/brisbane/conversations/201403/r1250420_16655717.mp3

At the end of the interview Sally reflects on her life with her son, and ponders the idea that if she could go back in time would she wish for a non disabled child. She responds that her love for him means she would never wish him away, but that she would also never want the stress of raising a severely disabled child for another family. This view point resonated immediately with my own thoughts but I also knew there would be some, particularly from those living with disability who would feel anger towards Sally for making that point. I see this argument play out in the ASC community from time to time particularly in conversations related to autism and genetic research. For some, admitting life can be hard when caring for an autistic person or wanting to avoid having a child on the spectrum is tatamount to dehumanising or diminishing the value of said child by implying their existence causes suffering for others. But what if it's true that hardship follows autism in many cases?

Is it really reasonable to suggest good disability allies and advocates can't talk honestly about the challenges as Sally does in the above interview, including those faced by primary caregivers without betraying the aims of disability advocates?  Is it possible that despite the independence and self advocacy Sally has worked tirelessly to grant her son her position of not wishing those unforgiving years of stress on someone else is ableist ?

How can we discuss the challenges for those who are disabled and those of us who love and necessarily care and advocate for without perpetuating fear of disability? To work for acceptance and inclusion but also the support needed to cope with the added care load many families struggle to manage. It's incredibly difficult to balance and we see this tension play out in various contexts, particularly online. As many of us know it can get ugly and unfortunately the fallout goes beyond those directly involved. 


http://supportforspecialneeds.com/2014/03/17/a-genuine-advocate-and-a-frank-conversation-at-sxsw/#.UybvTvbAxnA.facebook

I agree with the self advocate position that we must never blame a victim for the abusive actions of others, and for some the expression of difficulties in caring for those who are unable to care for themselves runs to that thought.  In that it places the blame for difficulties at the feet of those who have no choice in the burden they carry as a result of their disability. But I also believe to claim discussing the hardships that can come with caring for a child with a life long disability is to victim blame or degrade that person's dignity is to conflate the stress of managing autistic behaviours with blaming autistic people for them. There is a difference. 

There are some families living with extreme behaviours that do push them into crisis and burnout. It doesn't mean we apportion blame onto the autistic person for behaviours they may not be able to control, but the fact is their actions do create stress in others. This is undeniable. If a family says they cannot cope, it is not the same as saying we blame the autistic person for provoking that reaction in us (in the way a rapist might try to say a woman provoked an attack by wearing a short skirt). While it's not OK to harm anyone intentionally, can we not acknowledge that some behaviours can create chaos and chronic stress for both the autistic person and their families. To deny or avoid recognition of this because someone might be offended by the implication of blame leaves us going no where to addressing some very real problems. 

So how do we create a cohesive and honest narrative about the experience of autism that fosters the fundamental right to respect that all people are due, and also acknowledges the difficult parts? How do we admit autism can be hard to live with, and caring for an autistic person can be hard too, while working to counter the diabolical narrative of all gloom and doom that's commonly seen?

Although I see the comparison often made, autism isn't like race or sexual orientation, in that the impediments attached to the latter are purely the result of social construct. ASC is a disability by definition, and consequently carries inherent difficulties to a lesser or greater degree for each person. Fear of difference is indeed a community wide problem that demands addressing but denial of difficulties associated with a disability does nothing to counter ignorance and misinformation either.



Tuesday, February 4, 2014

When The Thinking Stops.

I used to be a fan of the popular internet site Thinking Person's Guide To Autism. I even contributed a couple of pieces to their page some time back, but I can no longer follow nor recommend their site as a source of support or information, here's why. Leaving aside the arrogance implicit in the 'Thinking Persons' title, their original intention from my understanding has been to provide a forum where facts get separated out from the very many fictions surrounding autism. Over time the page has evolved with a strong emphasis on autistic voices being heard and respected. Validation for the lived experience of autistics was made paramount. All good so far? Sort of. Until you understand how they made some rooky mistakes, yet fail to date to learn from them. There's many contemporary examples I could cite but for me it all started to spiral downward with the well intentioned yet poorly executed 'Dialogues'. If you weren't around back then, they start at the link below and continue on for many posts after. Be sure to read the introduction to get some context.

http://www.thinkingautismguide.com/2011/09/self-advocateparent-dialogues-day-one.html

There is no denying the editors of TPGTA are an intelligent, passionate and well intentioned group. The philosophy underpinning their site is a very good one. However what they failed to consider, and continue to do so, is the community of people they interact with and moderate will be a broad mix with many as a result of their autism or other neurological, emotional and psychological issues coming with unresolved pain and trauma. While the editors are well qualified to deal with the known facts of autism science and advocacy they are ill equipped to sensitively manage the emotional realities and complexities our community brings to the table. They apparently have a limited grasp on mental health issues, and this ignorance leads to a lot of non thinking.

The most pressing and obvious example in recent times has been their response to the awful deaths of autistic people at the hands of their mothers. Anyone who dared suggest they have sympathy for the level of hopeless desperation those parents apparently reached are referred to as "apologists" for the murdering parent. According to this theory, any parent who understands the terrible low psychological point that leads to suicide/homicide seeming like a reasonable option, is suggesting what the parent did was OK. Guilty by empathy. See below for a recent example by TPGTA's most active editor/moderator.

http://www.squidalicious.com/2013/09/on-autism-murder-apologists.html?m=1

This idea pushed on TPGTA, that negative perspectives of autism are the problem in these cases illuminates the ignorance of their position. When the child who is murdered is in their teens or twenties, as is often the case, it isn't an inability to cope with the diagnosis, rather one can assume most of these parents have known for many years of their child's autism, so there's other factors clearly at play here. The next part to this process in considering why these acts occur is where the schism kicks in. There are those who say it doesn't matter why, it's never OK and refuse to engage any further with the exploration of reasons for these tragedies. Then there's the rest of us who want to know and understand in an effort to consider ways to avoid further deaths. Then there's some others who feel deep empathy and understanding as they've been in that dark place too. They've plunged into hopelessness, often after having lived with chronic stress leading to exhausted coping mechanisms. They understand profoundly what might cause a parent to make such a terrible decision.

Furthermore there is a gender perspective worth noting. The overwhelming majority of parents who murder their autistic children are mothers.  Women are no more likely to commit fillicide after the first year of a child's life, which either means mothers of autistic children are more murderous at heart, or the complexity and burden of being a primary, and often solitary caregiver, which we know is the case in many situations, is a risk factor. Why aren't the people at TPGTA jumping up and down in anger at fathers who failed to see how poorly the other parent was coping and anticipate the need for intervention? 

So how exactly do the good folk at TPGTA think they are helping to prevent further tragedies? Given these murders are unlikely to occur due to lack of social acceptance but more likely carer burnout what should the thinking person do if they really want to prevent more? I'd have thought they would want to hear from parents who have been in that pit of despair, to ask them what drove them to that point, and what helped pull them out? You know, to actually talk and think about this issue. But that's not the case, in fact TPGTA closes ranks when someone dares to think and question beyond the 'autism acceptance' mantra. If someone claims to understand that desperately awful mental and emotional space it's dismissed as apologist. Knowledge that person could provide is derided, incidentally preventing any real dialogue that might allow people to reach out for help The "we must condemn these parents" chant may actually add to the sense of social isolation and stress many already feel. Those vulnerable people sure as hell won't turn to the lynch mob for support will they?  The inability to comprehend this shows an astounding lack of thought to me. And it is no place for parents who are struggling, or parents of newly diagnosed children who are still working through their shock and grief.

The one thing parents need post diagnosis is a place that helps separate out good information from all the bollocks. I believe TPGTA is no longer one of those sites and it's a damn shame.

*If you are reading this and currently struggling to cope feel free to message me at revive@iinet.net.au or if in Australia contact Lifeline at http://www.lifeline.org.au.