My special needs reads #3

Back to what I’m reading!

Couple of old links I looked back on but great ones… This one is on popular special needs blog Love That Max, and shares results of a survey taken of over 300 adults who have siblings with disabilities. These kind of stories always interest me, to see what other siblings think or feel. Have a read!

Here’s one I have on bookmark – and it’s about honesty in special needs families. Much love to Lisa Domican for blogging about this; it’s titled “coming clean about that autism taboo“. It’s about being able to have an ‘off day/month/year’ when it comes to living with special needs. The media loves a feel-good story, but it’s not rainbows and miracles every day and families who live with special needs know that. We look on the bright side, A LOT, but sometimes, heck, you just want a rest. So it’s ok to feel annoyed, angry, upset, frustrated… this is normal. And Lisa’s post is very insightful on the matter.

This is a great post from Mashable which has five different simulation videos that show you exactly what people with autism experience on a regular basis in “normal” life experiences. To quote from the article: “To the extent that these simulations can illustrate how noxious sensory stimulation can be for individuals with ASD, they may help the general population to better understand the difficulty of living with ASD.”

This one is recent and topical – as a journalist myself, it annoys me no end to see media outlets shout out crap like “person with autism shoots XXX number of people” and “serial killer autistic” and stuff like that. What pissed me off even more recently was an “article” that shouted out that there was a “significant statisical link between mass murder and autism”. But buried in that article was a line that the study was speculative and anecdotal. Uhhhh. My thoughts summed up perfectly here by autism father Stuart Duncan: “Dear news media, this is how you fail the autism community so badly”.

A pretty comprehensive study that covered 2 million children from 1982-2006 (out of which over 14,000 had autism) was undertaken by researchers at Karolinska Institutet in Sweden, King’s College in London, and Mount Sinai in the United States which states that “Autism risk half genetic, half environmental“. Have a look!

That’s it for this week … till the next time!

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My special needs reads #2

Alright, so I’m back with a list of all things special needs-related I’m reading this week.

I’ve been interested for a while in the suggested link between diet and autism, and while this article’s usage of the word “cure” annoys me, it’s an interesting piece on how there are differences in the bacteria found in the intestines of people with autism, and those who are neuro-typical. It also suggests pro-biotic therapy as something that might one day be an option.

Media is also an important part of how the general community views people with special needs. This article is about a mother and other groups pushing for mediums like advertisements showcasing people with all kinds of abilities. I personally feel it’s going to be a while before this becomes “normal”.

An unfortunate set of incidents I often end up reading about are guardians/parents who end up killing their charge with special needs, and more often than not, kill themselves as well. In response to many people on the internet showing sympathy for the mom who committed the latest murder, Squidalicious has posted a succint piece on the matter. There’s also an audio discussion on the same issue.

This one is a short article, which I found interesting, about a 22-year-old who is pursuing research about the potential link between Down Syndrome and Alzheimers. It’s not a hypothesis I’ve come across before, so it’s interesting to see if this goes anywhere concrete.

There’s a piece that hit closer to home – about the ‘hidden community in autism‘. It’s the set of families that deal with the extreme end of autism – with the biting, the hair pulling, the tantrums, aggression, and much more. It’s not easy to manage, and can scare people if they haven’t seen it before. While there are instances in that post which are more extreme than I’ve ever seen, even Karan sometimes has bouts of tantrums/aggression that aren’t pretty. It’s draining – and I’m not even his caregiver! While the article talks about appropriate services, there aren’t the kind you’d find in the Western countries over here. I think it is important though, that extra help is given to caregivers, as they cannot be expected to look after the autistic person 24/7. Plus, I agree with the article that families with more severe problems get marginalised. Everything is “happy” in the media, but there are those with autism who aren’t going to live “normal” lives. Ever. But people don’t realise that. It frustrates me sometimes to see the side of autism in the media where people are “cured” (BAN that word in relation to autism FFS), where autistics get jobs and earn money and get married. Not all of them reach that stage!

But let’s finish off with this feel-good story about Joshua, who called 911 when his Mom had a bad fall, surprising everyone with his knowledge of what needed to be done. Just goes to show, special needs children absorb a lot of information, even when we’re not sure if they are!

Anyway, that’s all I got this week … till the next time!

What I’m reading about autism this week

I read quite a lot of news stories, watch videos, comment on blogs – all about autism – quite a lot. I realised it might be useful to record, and share, what these are!

Here’s the first in the series of my “What I’m reading about autism this week”.

Technically this isn’t a read at all (way to go Devina); it’s a YouTube video. A TED talk by geneticist Wendy Chung about the possible causes of autism, which uses hard-core science to try and find out what’s going on, and emphatically debunks the “vaccines cause autism” myth. Here’s a look:

The next story is one on BBC News, titled “Admiring Autism: Busting ‘autism myths’ with a camera“. It’s about a photographer, based in the UK, who has documented her experiences with her son and other families who deal with autism on a regular basis through the medium of photos. Sarah Dunn and her photographic journey can be followed on Facebook and Twitter.

Then it was off to the NY Times for an opinion piece called “Autism and the Agitator“. It’s essentially about Jenny McCarthy‘s sudden declaration that she’s been misunderstood and that she’s actually “pro-vaccine”. What do you think about this brouhaha, I’d be interested to know.

Potentially the most famous autistic in the world, Dr Temple Grandin participated in an online chat Q&A over at Talk About Autism. It happened on April 22, but you can still read the transcript over at the link.

And one of my favourite bloggers, Lisa Maree Domican has a guest post on her blog, titled “Guest post from Ethan, Eli and Jodi: Autism’s other half” and it features short write-ups from two young boys with autism, who have written from their perspective what they think about it! Loved the idea and the photos added to the post.

A feel-good story here about a Minecraft server called Autcraft – it’s for children with autism and their families.

Then I was following an interesting timeline by Stuart Duncan (also in the previous story), or as he is known on Twitter @autismfather. Here’s a look at some tweets a few days ago (there are more on his timeline, please have a look):

That’s all I’ve got this week… until the next time! 🙂