Zurich’s #TrulyLove social media campaign to raise funds for Manzil Centre for Challenged Individuals

Just got information about this Ramadan campaign which supports the Manzil Centre for Challenged Individuals in Sharjah (disclosure: my brother attends that school so I have a vested interest in this campaign succeeding!) – do share!

So many social media enthusiasts out there sharing photos about things they love… I’m sure people can find time to add an extra hashtag to them to help a good cause.

Information about campaign:

This Ramadan, Zurich International Life Middle East (Zurich) has partnered with RAKBANK to help give some love back the community.

Zurich’s #TrulyLove social media (Twitter, Facebook and Instagram) campaign aims to raise funds and awareness for Manzil, and for each photo and caption posted, Zurich and RAKBANK will donate AED 5 – with the aim of raising AED 75,000 for Manzil over the 4 week campaign.

Participants also get the chance to:

  • WIN! Each week, 6 shopping vouchers worth AED 500 will be given away to those with the most likes and shares.
  • BECOME A STAR! The top posts will get to feature in a future Zurich advertising campaign.

So, do your bit for Manzil today and get posting! All you have to do is post a photo and caption of something you #TrulyLove

To participate go to trulylove.zurich.co.ae or www.zurich.co.ae

1. Submit a photo and caption
2. Use #TrulyLove to post
3. Get friends and family to vote
4. WIN!

Documentary about children with autism in the UAE in progress

A press release landed in my inbox about a documentary about children with autism in the UAE. I already watched “The Brain That Sings” by Amal Al-Agroobi at the Dubai International Film Festival (DIFF) so another movie on the same topic was great news. Yes, there’s a lot of awareness nowadays in terms of campaigns, fundraisers, and so much more, but movies I think contribute a lot to the public understanding of autism.

At present, ‘autism’ is this thing that the public, I think, is aware of, but doesn’t really understand. Movies are a great visual way of connecting with them to say, THIS is what it is, and this is how it looks.

The new documentary is being directed by Tricia Regan which is part of The Autism Project, an initiative started by Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, to raise awareness about autism.

The film features 10 children between the ages of 4 and 17, and are on different levels of the spectrum, as well as being from different backgrounds and nationalities.

Looking forward to seeing it!

 

Full press release: 

IMAGE NATION TO PRODUCE DOCUMENTARY ABOUT CHILDREN WITH AUTISM IN UAE

Project aims to raise awareness about Autism and inspire hope in families

Tricia Regan with the children

Tricia Regan with the children

Abu Dhabi, 2 April, 2014: Image Nation announced production of “As One”, a new feature-length documentary about Autism directed by Emmy Award-winning director Tricia Regan.

The film is part of The Autism Project, an initiative started by Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, to raise awareness of Autism in the United Arab Emirates. Autism currently affects almost 1 in 50 children globally with more young people being diagnosed each year.

The documentary focuses on the children, parents and teachers involved in a unique theatrical and musical program in the UAE for children on the Autism spectrum. The culmination of the program was a musical staged for the cast’s friends and family, as well as UAE dignitaries.

Her Highness Sheikha Shamsa bint Mohamed bin Zayed Al Nahyan, said of the initiative: “It is my sincere hope that The Autism Project will have a positive impact on the lives of the children and families who are participating in it, and that this documentary will help to inform the wider UAE public about Autism and its nuances.”

“Overall, we want to ensure that our society does not fail to recognize and embrace the amazing skills and abilities of autistic children, and that these children are given the opportunity and confidence to be active members of our community”.

Mohammed Al Mubarak, Chairman of Image Nation said of the documentary: “The Autism Project is something that we are immensely proud of. Autism is such a prevalent condition in the UAE, but there is still a stigma attached to it”.

“We hope this film, and all the hard work from everyone involved, will help bring a sense of hope to families and increase awareness of this issue.”

Tricia Regan, the film’s award-winning director said: “I am very honored to have been invited to create a musical theatre program in the UAE for kids on the Autism spectrum, and to have had the privilege to direct this documentary film.”

“This is a story of magical kids and dedicated parents struggling to understand autism, and build meaningful lives for themselves. It is joyful, funny, and also often heart wrenching – as is most of life. Clearly cultures from all over the world are dealing with autism, and this film not only makes that clear, it also shows us that we are all more alike than we are different.”

The ten children who were chosen to take part in the film are between the ages of 4 and 17 and are at various levels on the Autistic spectrum. Children from different backgrounds and nationalities joined the musical and theatre program, reflecting the diverse and international community in the UAE.

Information about the Autism Project and the upcoming “As One” documentary is available on this website: http://www.asoneautism.ae

Principle photography has been completed and the film is expected to launch before the end of this year.

Contribute your voice to the initiative on Instagram – @AsOneAutism Facebook, As One: The Autism Project and Twitter @AsOneAutism.

Autism awareness month supported by Hyatt Capital Gate Abu Dhabi

Note: I don’t normally post press releases on my blog, but I felt this one warranted a post 🙂 There’s a few activities for members of the public to get involved with, so if you’re in Abu Dhabi around that time, why not?

As part of Hyatt Hotels & Resorts’ international Global Month of Service, Hyatt Capital Gate Abu Dhabi has partnered with Abu Dhabi Cause Connect to support World Autism Awareness Day (WAAD) through a full month of initiatives to raise awareness on autism.

“As part of our on-going commitment to Hyatt Thrive and our local community, hosting and organising weekly activities throughout April (World Autism Awareness Month) was undoubtedly an important yet easy decision as it is a cause all our employees are committed to,” said Ashwini Kumar, Hyatt Capital Gate Abu Dhabi general manager, in the statement.

One in every 88 children is diagnosed with autism and each year, more children are diagnosed with autism than with juvenile diabetes, AIDS or cancer, combined.

“Awareness is the first step to early detection. It is important for us to engage the community so that there is increased dialogue about how to recognise autism and how to find the proper help and support for your child,” said autism consultant Nipa Bhuptani. “Early intervention plays a large role in increasing the quality of life of children, family and their caregivers.”

“Our employees are volunteering their time towards increasing awareness and acceptance of autism families in Abu Dhabi,” added Kumar.

These are the activities Hyatt Capital Gate Abu Dhabi is working on:

Hotel Fundraising – 2 April
From WAAD until the end of the month, Hyatt Capital Gate Abu Dhabi will ‘Light it up Blue’ by switching all of its exterior building lights to blue – the recognised hero colour of Autism Speaks – to mark its commitment to the cause.
Guests visiting Hyatt Capital Gate Abu Dhabi will have the opportunity to assist children with autism by adding a ten dirham donation to the end of their bill at any food and beverage outlet, Rayana spa and at check-out.

Employee Education – 2 April
To ensure all employees of Hyatt Capital Gate Abu Dhabi are able to share informed knowledge about persons with autism, awareness and early detection, Nipa Bhuptani will provide an educational seminar to not only increase awareness amongst hotel staff, but to also allow staff to share their learning with all guests they interact with. All employees will be wearing a colourful puzzle piece ribbon on their lapel throughout April, and thus the hotel encourages all guests to please speak to its employees about this important initiative.

Art Display and Auction – 7 April
To celebrate the unique talents and skills of people with autism, from 7 – 30 April, various art pieces will be on display on level 18 of Hyatt Capital Gate Abu Dhabi, in reception, the lounge and the hotel’s signature restaurant, 18 Degrees (18˚).
Painted and drawn by children with autism, approximately 25 pieces will be displayed and showcased to all guests entering the hotel. Art pieces are available for purchase at a price dictated by the buyer as a donation. All monies received from the sales will be put towards purchasing ‘wish list’ items for autism schools and centres.

Fun Day – 20 April, 9:30am
To warmly welcome and embrace children with autism, a day for these unique individuals and their families will be hosted by Hyatt Capital Gate Abu Dhabi at the Corniche Beach. The hotel will not only be donating snack boxes for the children, but employees will also join the event to personally play and engage with, and support all that attend.

Inaugural Launch of Support Network for Parents – 24 April, 5:00pm – 6:00pm
Hyatt Capital Gate Abu Dhabi will host the launch of Abu Dhabi’s first parent support network for autism families, led by Nipa Bhuptani. Although the prevalence of persons with autism is high in the capital, no formal support network currently exists. All parents that have children with autism are invited to attend the launch.
For parents in need of additional relaxation, a complimentary coffee break and yoga/meditation session will also be hosted from 6:00pm – 7:00pm by Rayana Spa, located on level 19 of the hotel. Prior registration is required and availability is on a first come first serve basis.

For those wanting to attend the Fun Day and / or Launch of the Support Network, please contact Nipa Bhuptani at nipa@nipabhuptani.com or +97150 7929965.

Apologies in many forms

It’s been a while. Hello there.

A lot is my fault – I have been so caught up in work, I have not been able to pay full attention to this blog, or any of my blogs.

But anyway, apologies are in order.

A lot has been happening with Karan. He’s got his summer vacations now, and is fully installed at home with my mother. Perhaps I need to remind her this blog exists, because she, not I, will be able to tell you more about what’s happening with him right now.

He’s 16 as you know, and it’s now showing through facial hair growth. I think he’s going to have to learn how to shave soon. Not looking forward to that…feels daunting. Not that I’ll be doing that, since I’m not at home very much.

Last night I came home early and curled up with a book on the sofa, and he sat next to me, with his head on my shoulder. I missed him and I felt gratified to know he missed me enough to want to cuddle up next to me for a bit (in 10-15 minutes his attention wandered and he walked off haha).

While he sat there, tranquil, as I read my book, I felt a bit sad. Like I haven’t done enough. I remembered some of my Gappa’s last words to my mother: “I’m sorry I didn’t do enough for Karan.” I felt like that last night. I think I have tried, as much as I can, to do enough for him. I know I am limited by time constraints, like a 9-6 job for example, and having my own life outside of my home, but that doesn’t make me feel okay about it I think.

So I try and contribute by helping spread the word about autism and special needs-related events, I try and find things my brother can go to, like his painting classes with START, or finding places where he can get evaluated and get more therapy. Things like that.

Spreading awareness where I can.

It’s been harder lately, again because of time constraints, but I do try.

Even so, I feel like I need to apologise…not to anyone else, but to Karan.

I’m sorry Karan, because I wish I could do more. I love you fatso.

Autism and restaurants – my first experience with discrimination

I can’t remember how old I was. I think I was 13 or 14. So it wasn’t very long after Karan received his autism diagnosis.

The semblance of “normal life” was slowly slipping away from our family. We’d stopped doing random things we used to do together. Gone were trips to the cinema, gone were long drives, and something that completely shattered our going out to restaurants happened.

One night, we’d decided to go out for a meal. We went to an Indian, vegetarian restaurant in Dubai, that we used to frequent a lot many years ago. Karan was still 4 or 5 at this time.

We sat down to eat, placed our order. Karan started whining a little bit; we realized eventually it was the noise in the restaurant bothering him. He kept crying for a bit, as we tried to calm him down. It didn’t work immediately; his diagnosis was new enough that we were still at a learning curve, still working out how to handle him.

After a lot of stares, mutterings and pointed glares, the restaurant manager came over to our table.

We pretty much got kicked out of the restaurant.

Apparently the other diners complained about my brother and the nuisance he was causing, and the manager said it was better we left. When we tried to protest and explain the situation (“this child has special needs” etc), we heard a rather loud: “Why don’t they keep their retarded children at home?” comment.

We left.

I think it scarred us for life. We tried going to another restaurant weeks later, but as soon as Karan kicked up a fuss, we upped and left. Perhaps my parents didn’t want a repeat getting-thrown-out scenario. We’ve never really gone to a restaurant since. Food courts yes (let’s face it, even if Karan screams like a banshee, no one’s going to hear him there), restaurants no.

I accept it wasn’t completely the manager’s fault; I imagine the diners were having a go at him and upset about their meal being “spoiled” by the crying child. But there was clearly no policy on dealing with situations like this. Yes, it was a nascent time then for special needs, but oh lord, how it hurt. How it hurt.

I don’t blame my parents for leaving. But I now realize that had I been older and in a position to make the decision, I would not have left. My mother and I have realized (in hindsight), that there’s no point in tucking our tails between our legs and running. It’s important to stand and fight.

You might say, surely we have a responsibility to not bother other people.

Well, I’m SORRY if my brother’s autism bothers you, but frankly, I’m just going to tell you to get stuffed. Who the hell are you to tell me that you’re entitled to enjoy a meal with your family at a nice place, and I am not? My brother is not?

Now you’ll say, well he was crying anyway so he clearly wasn’t enjoying it. No, he wasn’t. I agree. My point is, with autism, he needs to be exposed to “normal” things that everyone else is. I want him to go out, I want him to experience what everyone else does. By shutting ourselves at home, we’re just segregating ourselves more than YOU are already doing with your behaviour towards us.

So yes, I will take Karan to restaurants and places where he may cry or kick up a fuss. I will stay as long as I can with him to acclimatise him to the surroundings because it is important to him, and to us. For example, I took him to Chili’s on his birthday a few years ago; we got him molten chocolate cake to celebrate (he loved the cake there FYI). He did make a little noise (happy noises to be fair!) and kept trying to bang the cutlery on the table, but if anyone looked at us oddly, I glared back. It’s my thing.

I dare you to tell me to leave. I’m older, bigger and frankly, have had it with your shit.

Oh and that restaurant that told us they’d rather we left before they evicted us? We never frequented it again.

Cross-posted on FooDee

A mother’s thoughts on Autism Awareness Day

Guest post by Adita Divecha, Karan’s mother

I have not been able to put down my thoughts for a long time now. Don’t know why. Something always came up, or my thoughts were always muddled, or I was just being plain lazy. My daughter Devina is always encouraging me to write more and I keep on procrastinating. So anyway here I am trying to say things which I hope make sense.
Last month my son Karan celebrated his 16th birthday. He cut his birthday cake with his friends and teachers at his school and enjoyed himself. His teachers took photos of him cutting the cake, even smeared his face with cake and he did not get upset. As I watched my tall (he towers over me) and handsome son walk with me to the car, I realized how much he had progressed over the years. Of course there are still many more things to be achieved but we will get there soon.

Also, to digress a little, I realized suddenly after so many years that Karan would have been in the 10th grade if he had not been the special child that he is. I mean for all these years I have never really thought about this. And also even now I realized this just because my niece, Ananya, who is 4 months older to Karan, was having her 10th grade exams. And I was relieved I did not have to go through the tension I felt my sister-in-law Madhavi was going through because of her daughter’s exams. I don’t even know if I am right in feeling like this.

I think my chain of thoughts are still muddled. I was talking about Karan’s progress. We tend to celebrate every little thing that he achieves. I still remember how he used to scream when we would throw a ball to him. It is now a thing of the past: he loves to dribble the ball and throw it into the basket now.

He has mastered the concept of drinking with a straw after a long time. He just would not understand how to suck, something we just take for granted. So this was quite an achievement.

And the greatest achievement of all…He is toilet trained but was still wearing diapers at night as he still did not understand how to go to the toilet at night if he needed to. Then suddenly one fine day – I mean night – he suddenly figured out he just had to get up and go to the toilet if he needed to and that there was no need to wear a diaper. How we screamed in happiness. Now I am just waiting for him to achieve the next step of being able to clean himself. I am sure he will achieve this too.

He loves to paint and his brush strokes are getting better and better and he really looks forward to and enjoys his weekly outing to the START Workshops he attends. Also he enjoys beading and so likes to sit and make necklaces and bracelets. We have also introduced him to the iPad which I hope will improve his communication skills.
He likes to sit in the front seat of the car while going to and from school. He puts on his seatbelt as soon as he enters the car and then puts on the music. He does not like me talking on the phone so if it rings he puts his hand on my mouth, as if to say “No talking”. Very smart boy.

So on Autism Awareness Day, I ask you to educate yourself a little bit more on this enigma called autism…now that the latest figures are showing 1 in 88 children have it, it’s highly likely you will know someone who is autistic.

So go on, I’ve laid my thoughts bare for you…ask me anything you want to know. Perhaps with spreading knowledge, will I get acceptance for my smart son.

Please stop saying the word retard

I posted about this last year too.

I’m ashamed to say I’d nearly given up since then. I know people, on more than just an acquaintance level, who say “retard” all the time. I tried with a few, but they just don’t change. They promise they won’t say it, but then they do. I feel embarrassed that I’ve given up because every time they say the word, I cringe. I cringe and I don’t understand why they use it. I cringe and hate myself because I feel like I’m letting Karan down by keeping quiet.

I said a lot last year about how it hurts. But this video from Love That Max says a lot more. I did shed a few tears when I saw this, because instead of Max, I kept seeing my brother, Karan.

Here’s to me not keeping quiet any longer.

Marriage, autism and doubts

As I sat in the plush chair in a salon in Bombay a few days ago, I nearly started crying. No, the heat of the blow dryer wasn’t too much, neither did the searing hot iron burn my scalp.

I was getting my hair done to attend a wedding function that night…and an idle mind can lead to many things. This post might surprise many, including my mother, who probably has no idea I think this way [Edit: I just showed my Mom the post before hitting publish and she surprised me telling me she knew I thought this way]. Writing is cathartic though, and here I am, to share my experience with others who may be in the same boat.

I’m, annoyingly enough, at that age where people are asking about when I’m getting married (in desi years, I believe I’m near the end of my shelf life hahaha). Luckily, my parents aren’t too fussed about me tying the knot any time soon, so my Mom has been deflecting all attempts from well-meaning relatives to get me to see a boy. “No, she’s too busy with her career, not now,” my Mom says (I LOVE YOU MOM, YOU KNOW THAT?).

Anyway, as much as deflections are being made…I do think about the future. Who wouldn’t? Sure, I’d like to get married someday, with someone whom I love and who loves me (therefore putting a spanner into a traditional “arranged marriage” concept for me). But there is a condition to it: he has to love and accept my brother too.

I’ve gone through enough recently and seen others go through the same…a situation where one is rejected (as a potential wife/daughter-in-law) due to the existence of a child with special needs in the family. So now I’ve kind of brainwashed myself to believe that, in general, most people are narrow-minded and as a result of this, it’s highly unlikely I will ever find a man whom I can love and who will accept my brother, not just as a part of the family, but as someone whom I will be taking care of eventually. I think it’s a defense mechanism I’m employing, to avoid being hurt again.

Apart from this, another thought entered my head as the stylist tonged my hair and curled my ends: what if I do find a man like this and end up getting married? Can you imagine the logistics?

My brother is not a high-functioning autistic. He cannot speak, he only babbles. We still have to give him a shower and clean him once he uses the toilet. While he has progressed a lot through the years, he is still in need of 24/7 vigilance. Anyway, weddings are noisy and long affairs…how on earth is he going to attend ceremonies like the sangeet for example (an event where people basically dance, eat and drink in celebration)? Will he be able to handle the noise? What about the people? The crowds? If he’s even able to attend, what about my Mom? Can she really enjoy herself? What about looking after my brother? Will she be able to participate in the festivities?

All these thoughts kept repeating for each of the traditional ceremonies I’d expect to have if I was getting married. Before you say: don’t have these ceremonies, let me tell you, I’m a bit traditional at heart. If I ever get married (note my defense mechanism of “if” – it’s never “when”), I want the whole shebang. It doesn’t have to be necessarily big in terms of number of people there, but big in terms of absolute fun.

I’m so paranoid, innit? If…if…if.

At this point…I open my eyes, see my hair falling down over perfect curls on my shoulder, blink my eyes to dry the tears away… and move on. I allowed myself my 10 minutes of wallowing, now I was done and ready to enjoy the night with full-blown enthusiasm (I did, in 3.8-inch postbox red heels at that). As the song goes…the future’s not ours to see.

 

Autism theories from the Dark Ages in 2012

Warning: Long post ahead. Settle down with a cuppa if interested in autism and/or special needs.

Hark, I hear the Medieval Ages calling…okay, just the 1950s, and Dr Tony Humphreys is ushering it in.

First, read the following article which was printed in the Irish Examiner, which I stumbled across only yesterday:

 

by Tony Humphreys

Do not read this if you have had a difficult day/week!

Monday 6th Feb, 11.30 am. This article has still not appeared on the online version of the paper.

A team of researchers at Cambridge University is currently exploring the connection between high-achieving parents, such as engineers, scientists and computer programmers and the development of their children. Professor Simon Baron-Cohen, who is the director of the Autism Research Centre at the university, says there are indications that adults who have careers in areas of science and math are more likely to have autistic children.

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominanently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful. 

Children’s wellbeing mostly depends on emotional security – a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

It is frequently the case that it is when these children go to school that their emotional and social withdrawal of eccentricities are noticed, mainly by teachers, who themselves can struggle with how best to respond to these children. An unconscious collusion can emerge between parents and teachers to have these children psychiatrically assessed so that the spotlight is put on the children and not their adult carers’ own emotional and social struggles. Regretfully, the relationship contexts of the childrens’ lives are not examined and their mature development is often sacrificed on the fires of the unresolved emotiuonal defences of those adults who are responsible for their care.

It is important to hold to the fact that these carers do not consciously block their children’s wellbeing, but the unconscious hope of children is that other adults (teachers, relatives, educational psychologists, care workers) that when they are emotionally and socially troubled, it is their adult carers who often need more help than they do. 

Indeed, my experience in my own psychological practice is that when parents and teachers resolve their own fears and insecurities, children begin to express what they dare not express before their guardians resolved their own emotional turmoil.

A clear distinction needs to be made between the autism described by psychiatrist Leo Kanner in 1943 and the much more recently described ASD (autistic spectrum disorder, often referred to as Asperger’s syndrome). The former ‘condition’ was an attempt to understand severely emotionally withdrawn children, the latter concept, which is being used in an alarmingly and rapidly increasing way, is an attempt to explain children’s more moderate emotional and social difficulties. Curiously – and not at all explained by those health and educational professionals who believe that autism and ASD are genetic and/or neurobiological disorders – is the gender bias of being more diagnosed in boys (a ratio of four to one). This bias is also found with ADHD. Surely that gender phenomenon indicates the probability that boys are reared differently to girls and that due to social and cultural factors boys respond to the troubling behaviours of their adult carers in ways that are radically different to girls. 

What is equally distressing is that, as for ADHD, a whole industry involving research, assessment, screening, education and treatment has been developed, despite the absence of any scientific basis or test for either the originally ‘detected’ autism or for the broader construct of ASD.

Sami Timimi, a consultant child and adolescent psychiatrist and two colleagues rigorously examined over 5000 research articles on autism and ASD and found no scientific basis for what they now refer to as mythical disorders. They outline their findings in their book ‘The Myth of Autism’ (2011). The conclusion of their indepty studies is that “there is no such thing as autism and the label should be abolished”.

The authors are not saying that the children are not emotionally and socially troubled. What they are saying is – and I concur with them – that focus needs to be on the relationship contexts of these children’s livews, and to take each child for the individual he or she is and to examine closely the family and community narratives and discover creative possibilities for change and for more dynamic and hopeful stories to emerge for both the children and their carers.

Dr Tony Humphreys is a consultant clinical psychologist, author and national and international speaker. His book ‘All About Children” is relevant to todays article. 

I quite honestly, wanted to curse out loud when I read this. You know what this guy is talking about??? He’s essentially trying to eradicate all the progress the community has made towards understanding autism, it’s going back to the dark ages, when doctors didn’t know what autism was and decided, HEY LET’S BLAME THE WOMAN OF THE FAMILY!

Ever heard of Refrigerator Mom Theory? This was the theory floated around in the 1950s and 1960s that said autism was caused by detached mothers, those who could not emotionally bond with their kids. Often, when reading accounts from the past, you will find parents who say the wife was often blamed for the autism, saying it her coldness that caused the child to retreat within a shell.

This is one of the letters that appeared in the newspaper yesterday as part of the outrage sent in by readers:

‘Psychobabble’ has been discredited for decades

Tuesday, February 07, 2012

The article by Tony Humphreys claiming that autism is caused by “cold” or emotionally distant parents, displays such willful ignorance, lack of understanding and density of inaccurate and offensive statements that it is shocking that the Irish Examiner would publish it.

This kind of psycho-babble has been discredited for decades.

Autism is a biological, brain-based disorder. It is also a genetic disorder. The scientific evidence for these statements is overwhelming. We now know of more than 100 distinct genetic conditions that can result in autistic symptoms.

These conditions affect early development of the brain and researchers are making progress in understanding how that results in the specific symptoms seen in autism, which may range widely in severity.

In contrast, the claims by Mr Humphreys are a throwback to psycho-analytic theories that are completely unsupported by any evidence, as well as being actively damaging and hurtful.

In publishing this waffle, your paper does a disservice to responsible journalism and to all the patients, parents and teachers struggling to cope with the real disabilities caused by this condition.

Kevin Mitchell PhD
Associate professor of genetics and neuroscience,
Trinity College Dublin

 

This appeared in the printed version of the Irish Examiner Tuesday, February 07, 2012

Some other letters linked here: a letter from Kevin Whelan, chief executive at Irish Autism, who said: “What people with autism and their parents need is more research that specifically addresses how the condition occurs — not the defrosting of an assumption over half a century old“; then quite appallingly, a letter of support, from a music therapist no less! I can only imagine parents of children with autism who may be sending their kids to him, won’t anymore. 

And then…a response from the newspaper: “Autism controversy – The right to an opinion“.

I want to tear this apart, but it has already been done exceedingly well at The Voyage, I suggest you read it there.

I got in touch with Grace app creator, Lisa Maree Domican, who said one thing we can do is this:

If you want to write to the press council 

Press Council of Ireland
1,2 and 3 Westmoreland street, Dublin 2
Republic of Ireland.

info@presscouncil.ie

Also in her blog post, Lisa mentions a Twitter protest idea:

Join Twitter and use the hashtag #ilovemyautistic to refute the myths with examples from your own life
eg: “@lisamareedom: #ilovemyautistic son because he cracks me up! And laughing every day keeps me young”
you get the idea. Now go forth and counter!

I know this is a long post, and there’s a lot to get through, but people who are supposedly doctors, and say things like this which can impact the autism community and set us back to where we emerged from, need to know they cannot say whatever they like with impunity, and get away with it.

I shall reiterate for anyone who’s stuck reading this post so far: The refrigerator mom theory is bunkum. It’s bogus, it’s not real, it’s absolute SHIT.

As a personal example: my brother was showered with all the love he could get…he had started talking even. He had his grandparents to spoil him silly, an elder sister who was uber-excited about being with a little baby, a Mom who loved her new child. He was a child brought up in love. He still has autism. After the diagnosis, he was showered with even more love, even though it doesn’t seem possible we could’ve loved him any more. He still has autism.

So if anyone, anyone at all, whether he/she has a professional degree, tells you your child’s autism is your fault, is because you didn’t provide for him/her emotionally, I suggest you walk out of their office/clinic there and then, and name-and-shame them.

Don’t blame yourself; you need to be strong to take care of your child, not beat yourself up over a baseless opinion.