The issues of diet and expenses when dealing with autism

I harp on so much about autism awareness and how I think there’s not enough information about it out there in this region, and how there needs to be more resources for families…well, I read something last night and then again today that sort of proved my point (in my head anyway).

I saw this tweet last night, clicked and started reading. Dealing with autism on a daily basis, we’ve heard and seen it all. Including the idea of gluten-free diets, gluten-free casein-free (GFCF) diets and more.

Many years ago, we took the decision to put Karan on a GFCF diet. He was quite strictly controlled for many, many months. We saw no difference from before the diet and after, and eventually decided to re-introduce gluten and casein back into his food. No difference whatsoever. We realised there was no point in putting so many restrictions in front of Karan since it didn’t affect his behaviour one iota.

The doctor in the article refers to 90% of children with autism having milk and wheat allergies. While it does not link to what study these findings are based on, I never knew it was conclusive, ie that dietary changes most definitely affect “autistic” behaviour. I did know that some people think changes in diet do help kids with autism and if that’s true, then that’s great you know. Whatever helps – there’s nothing right or wrong I think. I guess what this just reinforces is how different every person with autism is, and how a method that benefits one person doesn’t necessarily benefit another.

Then I saw these sentences:

Experts said there was a general lack of knowledge about autism in the UAE. Even the extent of the problem was not well recorded.

No shit, Sherlock! I don’t know how many times I’ve needed to scream from the rooftops on how the knowledge about autism and special needs in general is not very high and it needs to be addressed. Now even experts have agreed with me. And this line here:

“We know it is a problem but we have no statistics to determine how many children are autistic,” said Dr Ali bin Shakar, the president of the Emirates Medical Association.

And if doctors here don’t have statistics on the issue…can I really expect the general public to know anything?

The second half of the story also focuses on costs associated with therapy and education for people with autism. This is true: it is expensive for families who deal with special needs if they want to go all the way. When I say all the way I think about schooling, then extra therapy such as speech therapy or occupational therapy or even physical therapy (for fine or gross motor skills etc). Not everyone can afford to do all of that here; when I read of how therapy sessions in certain countries in Western regions of the world are guaranteed no matter what, I despair a little. One-on-one sessions, which by the way, are highly recommended, can take a massive toll on the bank balance unless one is from a family of means. Here’s a quote from the article:

The result is huge bills – an average of Dh70,000 a year to treat an autistic child, according to Dubai Healthcare City, which has four private treatment centres. But Dr Abdul Kareem Al Olama, an executive director at Dubai Healthcare City, says parents should never lose hope.

“There are many [public] facilities, such as Rashid Hospital and the Dubai Autism Centre, that parents can approach,” he says.

“Parents shouldn’t panic, there is help available.”

Two issues here: the expense (which is a lot) and then the doctor saying “there is help available”. Yes, there is help available but there isn’t enough. Do you have any idea how long waiting lists are for special needs institutions in the UAE? Of course we’re going to panic when we wait, and wait and hope we get a call soon saying we have a place at the school! Of course we’re going to panic when we hear the enormous cost of getting my brother one-on-one sessions with a speech therapist for example. (He doesn’t go for one-on-one treatment FYI. I wish he did.) I’ve never lost hope for my brother…never will. I just get frustrated because I wish I could do more for him somehow.

On available therapies themselves, I’ve been looking at reports on how dolphin therapy helps children with autism. Do I even have the option of trying that out in the UAE? I saw news about a year ago saying this was in the pipeline but I see nothing to tell me it’s a reality now (please, please correct me if I’m wrong; I’d love to be wrong about this one). In addition, some kids with autism take time to pick things up, and sometimes they just get in an instant. So if Karan doesn’t take to something immediately, it will require many sessions to get something through to him…how much is that going to cost?

I also want to point out what this line in the article made me think of:

“There have been many improvements, but he’s still autistic and there are many barriers to overcome in the next few years.”

Heaven knows I’m not being harsh; I deal with autism myself every day… but no matter what therapy you put your child through, no matter how “normal” he or she will seem at the end of it if the therapy is very successful… autism isn’t a disease that can be cured. If a person is autistic now, he/she will always be autistic. Autism is a part of the person. For life. The sooner families dealing with it accept it, the better it will be I think.

I think this article just reinforced my belief that the awareness levels in this region on autism and special needs is just really low, which only contributes to the discrimination and derogatory behaviour some of us have to face from the general public.

It’s sad you know… people with special needs treated as “sub-humans” by other “humans” (not referring to doctors here but to the general public). What does that say about humanity?

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2 thoughts on “The issues of diet and expenses when dealing with autism

  1. Dear Devina,reading this just broke my heart even more.My soon to be 3 years old son Yassin was diagnosed in August and if you think there isn’t enough info in the UAE,you should certainly consider yourself lucky not being in Qatar.Its worse here,the only government institution ” Shafallah Centre ” hasn’t been taking any applications for the last 3 years.I was left with 2 options,one that I tried for 3 weeks,then pulled my son out,because it was basically a place to dump my kid, pick him up at the end of the school day,without asking a single question what he has being doing ! No schedule,and any questions of any sort were unwelcome,needless to say ” frowned upon” !My other option is a special needs school,where hygiene is a word they never heard of.Facilities are poor,staff is out numbered by the poor kids and it was a sad place to be in.The latter cost QR49000 per year !!So here I am ….hoping that the Dubai Autism Centre would be the final answer,I am even willing to split my family and relocate.My son is at home,mainstream nurseries won’t accept him,I am only given ST and OT once a week in the hospital where he was diagnosed and that is it.Any where I go I get the ” he needs at least 25hrs per week “.Occupational therapists are rare and busy….so if you get lucky,you can probably get an extra hour per week.Its says a lot about humanity.Autism is not a disability,its a gift.Yet,we live where its treated as a disability and in my case my son has to stay at home,wasting precious time for early intervention,and there is nothing that could be done any different here in Qatar.So much needs to be done in terms of awareness,as 99% think its Downe Syndrome,then they tell you,” but he looks normal “!!!! People have no idea….the public is clueless.

  2. @rahimaelsawi Thanks for stopping by. The condition in Qatar on this matter indeed sounds appalling. It sounds very, very hard to deal with that in a country that doesn’t have much to offer.Have you already contacted Dubai Autism Centre or applied etc? It’s a bit hard re waiting lists but I do hope you’re lucky and get a place soon. What some people do, and we used to do, is supplement his schooling with us working with him at home. However, in this we had the support of the teachers who told us exactly what we need to be teaching him.How severe is the autism, ie, is he verbal, non-verbal? What about things like motor skills or communication?I won’t lie and say this is a walk in the park, but there are things you can do to help. Why don’t you drop me an email at contact[at]devinadivecha[dot]com ? I’d be happy to talk to you and answer any questions. Plus if you’re in Dubai at any point (I’m unclear abt whether you’re here now or not) we can try and arrange to meet sometime.

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