Posted by: myautisticmuslimchild | November 30, 2010

First Muslim Conference on Autism

Sorry for not posting anything for a while, but I had the pleasure to attend the First Muslim Conference on Autism in New York city this past weekend.

This event was scheduled early this year in February, but the city was buried in a blizzard and the event had to be canceled. This community is not just a talker, but they always spring into action whenever they see there is a need, or an  opportunity of doing good. I call them the “Pioneers of the autism movement amongst the Muslim community in the USA”.

The MAS Community Center in Brooklyn hosted the event. They had great speakers who covered all aspects of autism. We all agreed on the importance of educating the community, providing valuable information, and resources for families with autistic children.

Also, we talked about how the community could provide emotional, physical and spiritual support for families with autistic children. One excellent question posed was about how can one suggest to a parent that they should have their children evaluated. Honestly, I cannot find the right answer to that question. It would be very easy just to tell the parents “take your child to the developmental pediatrician and have him checked”, but then I would probably have to be checked into the hospital in some cases as well for being so forward. This question has been, and I think always will be, a very sensitive issue. We are dealing with denial, cultural influences, and shame in that many people don’t want to think that their children are not typical – therefore they might be missing the warning signs. Language barriers can play a huge role in asking for help as well, as is the lack of proper services.

All the way home I was thinking about a sensitive solution and I came up with an idea. But I do request all of you out there reading this post to help us develop an approach in regards to this issue.

The first step is to raise awareness amongst our community, so the children can be properly diagnosed and get services at a young age. Starting services at a young age can enhance their progression a great deal.

My idea is to make a small poster with the list of developmental mile-stones, signs and symptoms of autism, and on the bottom list some of the available resources. This poster can be either handed out, or displayed in an area where lots of people can see it and have easy access to it.

This conference was a big step toward raising awareness amongst the Muslims about autism, but we still have a long way to go. I can’t thank all the sisters and brothers who made this event happen enough. It is a serious issue that needed to be addressed, and it is long overdue, and the New York community took the initiative to start something that can potentially help thousands of Muslim children, and their families, in the spectrum. God bless you all for helping and for making a difference.

This event was recorded. When the video recording is available I will post the link for you all.

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Responses

  1. Your poster sounds like a very good idea.
    Early intervention and raising positive awarness are so vital.

  2. One of my relatives (Dr Raheela- I don’t know her surname but she works as a pediatrician) lives in New York and her daughter is on the spectrum. I wonder if she attended?

    I know what you mean about cultural barriers as I’ve said before, one of my mum’s cousins displays many of the characteristics of being at the mild end of the ASD spectrum, but no one will even admit the possibility to any family members because it would cause offense and is often misinterpreted as an accusation that he’s “pagal” (mad). Funnily (ie ironically) enough, most of the family behind his back would admit they think he’s “pagal” anyway so I don’t see how this could make matters worse- but you know all the crap surrounding the stigma and everything else.

    He is married with grown up children now (his marriage is very turbulent for obvious reasons). The other problem is that even if his wife or other family members admitted to the possibility, he’s one of those guys who’d never go to see a Dr no matter how ill he was and British law would not allow anyone else to speak to a Dr on his behalf unless he did something very extreme (ie showed signs of being clinically insane, attempted suicide etc)- so we’d be pretty stuck in terms of being able to do anything even if deep down we all knew what the issue was.

    I don’t know about the Ummah as a whole, but certainly my experience of Pakistanis (in the UK but ESPECIALLY in Pakistan) have a REALLY REALLY bad attitude towards disability. If it’s physical, then at least no one can attempt to deny the disability but if it’s to do with mental or psychological impairment, then it’s invisible and the family do everything possible to attempt a cover up no matter how bad it gets. Their excuse is that it is to ‘protect’ their disabled child, but really it’s to protect their fake sense of status within the community. They would rather deny the disability and try to force the child to fit in with their standards, than accept any form of help or treatment because that would involve accepting the diagnosis and attempting to address it (hence the tragic situation you mentioned some months ago of the single mother who killed her two children).

    They need a wake up call. I think that one thing that could help parents is to not scare them, but rather offer them hope. The label ‘Autism’ is scary enough in itself. I think a short video (youtube or wherever) that can show a child who has made really good progress in a specific situation (eg throwing a huge tantrum in a supermarket and then a year later being calm in the same situation and possibly even becoming responsive towards the parent) so that they can see that this is the potential they have to make good progress if only they reach out, seek a diagnosis and accept help that can improve the whole family’s quality of life. You said yourself that one of the Autism charities really annoys you because it always shows a bleak picture of how bad Autism is and how the person with ASD as well as the family are ‘doomed’ because of it- it’s most likely this is the image people have come across and are most afraid of.

    I must admit though, I’m not entirely sure how you’d get the vid across to people. I’ve been on popular Muslim forums and found that most people on them completely ignore topics related to disability of any sort (unless the disability directly affects them or a family member). The awareness campaign would need to be set somewhere that they can’t easily ignore. I’m thinking a good place to start would be to have an assembly or an awareness workshop at an Islamic school or a state school with a high percentage of Muslim pupils. That would be particularly useful for those schools who already have one or more ASD pupils. I think both elementary schools and high schools can benefit from this. Elementary so that young kids have exposure to the subject of Autism so they’re less likely to mistreat Autistic kids that they come into contact with and high schools because then you’re dealing with young adults who might hold some sway in influencing their parents if they have an autistic family member to seek diagnosis/treatment/help. I’d also suggest that as part of an awareness campaign, you reassure families that this does not happen due to bad parenting, or eating habits during pregnancy and it should NOT be construed as a punishmend from Allah (swt) etc (cos’ many superstitions surround these sorts of disabilities and the families carry a lot of guilt about that). They also need reassurance that their concerns will be dealt with confidentially if they approach a Dr about this and they would not be at risk of losing their children to social services over it. If you do make posters, then they should contain contact numbers for professionals who can offer confidential advice and also I think it would be a good idea if you can find a translation service for those who have language barrier issues. Another idea would be to see if the posters can be printed in other languages. My Dad’s Urdu and English are both exemplary so I can ask him to translate a couple of leaflets/posters for you if you want.

    I’m dismayed that I’ve not had much success in finding many hadith resources regarding disabilities and illnesses. There are the obvious evidences about the expiation of sins for being sick, the reward of being patient during illness, but nothing specific that would apply to this sort of situation.

    Neelu

  3. […] Here is the original post: First Muslim Conference on Autism « My Autistic Muslim Child […]

  4. Hi there from California! I am one of the editors at the Thinking Person’s Guide to Autism. We recently published a piece from Emma Apple on autism in Islam, “If The Scarf Fits”

    http://thinkingautismguide.blogspot.com/2010/11/i-could-write-rather-mundane-thousand.html

    Emma blogs at Blue Hijab Day
    http://www.bluehijabday.com/

    As far as your poster idea goes, why not use the resources at CDC’s website

    “Learn the Signs. Act Early”.

    http://www.cdc.gov/ncbddd/actearly/index.html

    I don’t read Arabic, but it looks to me that some of the free, downloadable resources have already been published in Arabic.

    • Thank you so much for a good advice. I will certainly look into it. It will make preparation much easier. It will be translated to Urdu as well and Spanish besides Arabic. I am hoping we can reach out this way, and it will be a bit more discreet. Thank you again.

      • Here’s a video in Spanish from Autism Speaks

        • thank you so much for your help and all suggestion Liz. God bless you for all that you do thank you

    • Liz, I just saw this comment (missed it on my cell phone earlier) thank you so much 🙂 I’m really honored to have contributed to The thinking persons guide to Autism and very grateful for the connections I’ve made through it. You’re doing amazing things, thank you again!

  5. Asalamualekom sis
    Alhamdolillah this is so wonderful to read about, I so wanted to attend but alas I’m in Chicago and no way to travel.

    I have a daughter with Aspergers & am self diagnosed with Aspergers myself. I started Blue Hijab Day in April this year for Autism (bluehijabday.com) and have plans for things like posters (we had a poster made up this year which can be seen on muslimasoasis.com … I need to put it on blue hijab day website still)
    I’m a designer and would love to help/collaborate with you inshaAllah!

    • wswrwb, mashaallah sister you started something amazing. May Allah reward you for trying to increase awareness. I am inviting you to contribute to this blog, and certainly all credit will goes to you. I am open to all subjects and ideas. About the help, I can not thank you enough sister. It has been a long and hard process to try to reach parents, and finally I started to see some results. Alhamdulillah.

    • Huzzah!

      This is one reason we started The Thinking Person’s Guide to Autism — to connect people with autism with each other, and to connect parents of children with autism in a way to increase community and understanding.

      • Alhamdolillah I’m so excited! I have come across your blog before but lost it in all the millions of links I have around here 😉 so glad I found it again (big thanks to The Thinking Persons Guide to Autism and Liz for tweeting it to me!) thank you so much for your compliment, you too are doing amazing things! MashaAllah!

        I would love to contribute to the blog inshaAllah and I’d also like to extend the invitation to you to contribute to the Blue Hijab Day blog and facebook page (cross posting or even just posting a paragraph with a link to your posts here is perfect, that’s what most of the posts are at the moment!)

        Please send me an email ummhend at gmail dot com or bluehijabday at gmail dot com and we can talk more!

        I’m also extremely excited to see our community becoming more aware of Autism and I think your idea of posters introducing parents to symptoms is the next step in the progress from awareness to understanding and action inshaAllah.

        Thanks again Liz! The thinking persons guide to autism is an indispensable resource to the autism community and I think you’ve definitely achieved your goal of centralizing information, support, experience etc. Bravo!

        • Thank you so much for your kind comment and I ma very happy to know you. I think we can do great things together to help our precious children and their parents. may Allah bless you for all your great work…ameen

      • Thank you Liz for such a valuable contribution to the autistic community. God bless you

      • Liz I want you to know you are being successful connecting us . Thank you. Reaching out to others and findinf people to hlp me in this quest is my main concern, and you helped me a lot.

  6. […] wanted to share a link to My Autistic Muslim Child and her post about the amazing Autism conference that happened recently at a New York Community […]


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