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Archive for the ‘Autism’ Category

Autism, sexuality, law

Title:

The Autism Spectrum, Sexuality and the Law: What every parent and professional needs to know

Authors: Tony Attwood, Isabelle Henault, Nick Durbin

Review:

It is not difficult to understand that individuals with hampered ability to recognize social cues, interpret interpersonal data, and process the long term outcome of antecedent/behavior/consequence will at some point also have hampered ability in the realm of sexuality.  The premise of this book is to take a specific circumstance, that of Nick Dubin, and make that circumstance tangible and educational for individuals affected by Autism, their families, care providers, doctors, therapists, and legal counsel.  That is a lot to ask of one book.  Unfortunately it falls short of the mark, not because it doesn’t aim properly, but because some of the contributors don’t make the effort to put power into their pull.  

Dubin’s tale is disturbing because it is both relatable and abhorrent.  His story will be particularly difficult to accept by those who were victims of childhood abuse.  At the same time, so much of the story is believable and creates compassion for Nick and his family.  Nick’s chapter and his mother’s chapter are least beneficial in terms of actual education and material.  By contrast, Nick’s father’s chapter is gripping, and filled with applicable information from the very beginning.  It is worth the read of this book simply for this section. It may have been preferable to have an entire book written in this voice. 

Tony Attwood’s section is perhaps the most disappointing.  His section reads like a university psychology student’s homework assignment, writing 500 words based on a bullet list of subjects.  Considering some of the monumentally influential work Attwood has contributed to the field of ASD literature, it is disappointing.  He does include a nice list of reading suggestions for the reader to pick up from their local library or bookstore, if they are seeking more specific information.

Dr. Isabelle Henault’s section concludes the book, and is secondary only to the section written by Nick’s father.  Henault does the work that we previously expected of Attwood, as she takes the reader through developing sexuality, how social and relational deficits in conjunction with targeted bullying and conflicting sexual sensory data can cause those on the autism spectrum, particularly those with Asperger’s Syndrome, to struggle with their sexual identity.  Many will confuse issues of privacy and legality.  Henault provides information for therapists and psychologists, assisting them in identifying risk factors and in assisting their clients as they navigate this new and confusing territory.

This book is not for those who are teaching emerging adolescents about their sexuality. Books on that subject matter, such as Sexuality and Relationship Education for Children and Adolescents With Autism Spectrum Disorders by Davida Hartman, are great guides on the specifics of adolescence and sexuality.  The Autism Spectrum, Sexuality, and the Law is appropriate for those who feel they, or their clients, are already struggling with this intense issue.

*Review originally appeared in the Psychology section of Library Journal

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This is what Autism looks like.  Quirky, eh?

This is what Autism looks like. Quirky, eh?

I think everyone who knows me knows that April is Autism Awareness month.  The standard of spreading awareness is pretty high in recent years, we are definitely getting the word out.  It would be nice if the funding and services kept up with both the diagnosis and the awareness, but I digress.

What I want to talk about is a phenomenon that I’ve witnessed personally (people have said these things to me) and also online.  We all know that the internet is full of trolls that you should ignore and shouldn’t take personally.  Those people are not the ones that I am talking about.  I am talking about the friend of a friend, or the person randomly commenting on some awareness photo – those ones who just don’t get it.  Or worse, who don’t get it but think that they do.  In the last week alone, I’ve been in 5 – no less than 5 – heated discussions with people about the rise in diagnoses of Autism  Surprisingly otherwise well-educated, somewhat well-meaning, but sometimes ridiculous people arguing that there’s nothing about the rise in Autism diagnoses except the fact that we’re labeling “shy” and “quirky” kids with Autism, when we weren’t before. Although it definitely doesn’t explain everything (Most scholarly reports show that while between 30 and 50% of the rise in Autism diagnoses can be explained by increased awareness and a greater ability of parents or caregivers to identify signs of Autism in cognitively able children, that leaves a good percentage of the increase unexplained.), Autism is increasing broadly, across all levels of the spectrum.  In spite of the increase in numbers, the ratio of diagnoses between male and female autists has remained level, with 4.5 boys diagnosed per every one girl. But the thing that bothers me – I won’t say most, but a LOT – about this argument is that it absolutely marginalizes a good portion of actual autism diagnoses and the hardships, difficulties, and exclusions involved in the manifestation of their symptoms.

Autism is a spectrum disorder.  As a result of being a spectrum disorder, it is definitely, well, spectrumy.  Yes, there are many people who have high functioning autism (formerly Asperger’s Syndrome in its own right, but now under the full umbrella of Autism in the DSM-V) who can “pass” as neurotypicals.  I dislike even saying the word pass, it’s so … whatever, but people who *actually think this way* would use that word.  By suggesting to those high functioning autists that they are merely shy, you are negating their experiences and their difficulties that are diagnosed by professionals, often after years and years of questioning whether there was really something different in the way they processed things. High functioning autists often fear the label, too, or wonder whether their experiences are what everyone experiences.  And they, or their parents if they are still young enough, are fed this line about just being shy or quirky (or that there is nothing wrong with them except bad parenting), and it puts them off of seeking proven therapies that can help them.

Repeatedly claiming that the increase in numbers is a result of categorizing previously “shy” or “quirky” people as autistic is also problematic for all the people diagnosed with autism that fall under Classic Kanner’s autism.  In other words, those who are not high functioning enough to “pass”, who do not have asperger’s syndrome, who have speech issues or speech loss, who have repetitive physical stims that interfere with social function or social interaction, who may have self-injurious behaviors, who may have severe anxiety related to ASD.  This would be my son.  He is not a prodigy.  He is not an autistic savant.  He doesn’t have some magical skill with numbers, He is a typical pre-teen boy who hates homework and happens to have Autism. There is no one who can interact with him who will not immediately know that he has classic Autism.  He will never “pass”.  By focusing the attention on increase in Autism rates only on high functioning Autism or on Asperger’s Syndrome, you COMPLETELY NEGATE the increase in all other forms of Autism.  High functioning Autism isn’t increasing.  Asperger’s Syndrome isn’t increasing.  AUTISM is increasing.  The entirety of the spectrum, on all levels.

Non-verbal autists are the most excluded by this commentary.  If the public perception of Autism is that it is a diagnosis for parents who are seeking to explain away their children’s behaviors, or the diagnosis du jour for greedy doctors, or whatever that perception may be, it takes away valuable time, resources, trained staff, available pharmacology, research dollars…essentially everything important to advancing our understanding of the causes and impacts of Autism on the individual.  This always affects those who cannot express, with their own words and voices, the detrimental effect it has on them.  They have no way to communicate all of these things unless a family member or trained professional finds a way to help them access their own words. Sometimes that never happens.  One boy I worked with had only one word, over the 4 years I worked with him – he could only say his own name (No, I won’t engage in a remote television character diagnosis, much as I love Hodor). As a person who has experienced both the parental and the professional side of working with people affected by Autism, I have to tell you – we’re exhausted, yo.  But we know we can’t stop.  Because for some, we are their only voice.

Autism is increasing.  We need to know ALL of the reasons why, without disdaining or discrediting ANY of the reasons why.  So stop with the “paranoid parents” and the “designer diagnosis” commentary.  It’s not helpful, and frankly when I hear people do that, a Lily Allen song runs through my head. Get involved.  Find a way to help people at all stages of diagnosis.  Find a way to help fund some research.  Find a genetic databank to get entered into.  DO SOMETHING.  But don’t just complain about it, because that just makes you bitter, and others bitter, and no one benefits.

 

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The following link is an interesting post from a person with Autism, addressing self-stimulatory  behaviors.  I remember in the early days of DS’s diagnosis being really concerned about stims.  His stims are large, gross motor stims that get more noticeable as his body grows larger (he is now taller than I am).  But you know what? He processes thoughts while he is stimming.  And he comes to conclusions while he is stimming.  Much like I do, when I twirl a strand of hair around my finger tip and flick it against my ear, or my lip.  This is a stim.  Many people have them.  Get over it.

Socially Inappropriate.

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Finding the right words for your child with autism is difficult. My child is amazing, fantastic and has deficits in learning and social development. His deficits do not define him, but often, we are asked to define what autism makes of us in 2 word sound bytes.

a diary of a mom

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My girl cracking herself up with scripts last night

I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”

I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”

My questioner cocked his head. “Okay, so how does that read on a sign?”

I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”

I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”

He was right. I do.

Because for me, trying to reduce autism awareness / education / advocacy…

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small things

There truly are no small things on this journey

a diary of a mom

 

I’m in my closet, trying to find the top that goes with this damned skirt.

This one?

No, this one is too long.

Where the heck is it?

Brooke shouts from her room.

“Mama! Come be with me!”

Those words. I’ll never, ever, EVER tire of those words.

I call back.

“I’m on my way, sweet girl; I just need one sec!”

She makes her way into my room. Her hair is wet. It drips down the back of her pajama top.

“Come here, baby,” I say. “I’m going to squeeze your hair a little, okay?”

She turns around and lets me wring out the water. It seems like such a small thing, this, but it’s not small at all. It’s a tremendous act of trust, years and years and years in the making.

She looks at the skirt and boots on the floor of the closet.

“What…

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As those of you who know me – well, know – I have three lovely boys.  They’re wonderfully average boys.  They are neither brilliant nor miserable. They are rambunctious, but empathetic and loving.  And, to date, I have not had any idea or reason to think they will become either astronauts nor axe murderers.  I’m the type of mom to consider this success.

I did have a lot of worries about them adjusting to school in the UK, but I was also VERY excited to give them the chance to do so.  In the U.S., the schools (and their quality) are very much dependent upon the area where you live.  Schools have different curriculum standards state by state, and even local communities can adapt or change curriculum standards.  There is national testing, but it is not necessarily a good indicator of what one is good at, only what one has memorized.  So, comparing this to the UK educational system left me wondering exactly where and how the boys would fit in.  The short answer for my younger two:  Quite well.

The youngest is top of his class in Math and in Reading.  He’s been moved from year 3 to year 4 for spelling.  He has issues with sitting still and being as quietly attentive as the other students do.  I think that the U.S. teachers are a bit more permissive when it comes to those types of outbursts.  The middle child is top of his class in Math and in Science.  He is a bit behind in spelling and in writing (they all have miserable penmanship).

DS2 and DS3 before starting the first day of school

My oldest son is the child I was most worried about.  For those new to this blog, he has Autism Spectrum Disorder.  He has classic Kanner’s autism, which means he’s not a prodigy or secretly brilliant or a miniature Einstein.  He has difficulties with dyspraxia, coordination, fine motor skills, social environments, auditory processing, and abstract concepts.  Being unfamiliar with how children with special needs are educated in the U.K. (but VERY familiar with the educational battles of the U.S.), I was really concerned.  I felt it was a chance to let him grow and experience new environments, but worried that we were making the wrong choice, that it might be too much for him.

I’m happy to report that every.single.one of those fears was unfounded.  I’ve had meetings with the educational boards from two different boroughs (counties) and have not experienced a single bit of red tape.  They seem concerned most, and foremost, with making sure that DS1 has the right supports to receive the best education possible FOR HIM.  Not the least expensive, not the most expensive, not the least they can get away with.  The best ones FOR HIM.  They also engage him in the process, asking him what is most difficult for him, what is easiest, where his interests lie, etc.  He’s thriving in this environment.

His intake was done quickly.  His intake testing was done quickly.  He’s had all of his reading levels, math levels, science levels, etc. evaluated and mapped. He continues to excel at memorization (spelling win!) and struggle with abstract analysis (reading comprehension).  They have such a clear pulse on his strengths and weaknesses, and they work with me as much as I want them to.

The stress of finding a school that was RIGHT for each of them, figuring out a way to get them to and from school, and hoping against hope we were making the right choices for them – suddenly those stressors seem so very much worth it.  I’m not saying one is better than the other.  But, in this case, one seems better FOR US.  I wouldn’t have found this type of school environment anywhere in the U.S., without paying a large portion of our salary in tuition fees.

This blog has languished in recent months.  This is because my OWN schooling, the schooling I’ve been doing for the betterment of – whatever that is – is in its last gasping death throes.  I have one week – exactly one week – left.  I’m hoping to be able to have more time documenting our transitions in the coming months.  In the meantime, here are some more pictures of my  handsome children on the first day of school, mostly because they are absolutely gorgeous. Said without bias, I swear!

 

 

 

 

 

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