Defeat Autism Now. Can it be done really?

Curing Autism, the Walton's Style?

Marilyn Monroe, reputedly a woman with Aspergers Syndrome.
Marilyn Monroe, reputedly a woman with Aspergers Syndrome.
Temple Grandin, Scientist, Autism speaker and woman with High Functioning Autism
Temple Grandin, Scientist, Autism speaker and woman with High Functioning Autism
Film about Temple Grandin's life
Film about Temple Grandin's life
Sensory integration Therapy is recommended for children with autism
Sensory integration Therapy is recommended for children with autism
Sensory Integration room
Sensory Integration room

Autism Cure or PR Stunt?

Autism Cure? Who knows?

Autism is there a miracle cure?

I am writing this article for therapeutic reasons really. As the parent of an autistic child like most others I have already read countless articles about what the usual signs of an Autistic Spectrum Disorder are and how you are likely to feel when you receive an Autism diagnosis for your child. Also just like every other parent who is living with Autism every day I have now been left with no choice but to take on the role of being my child’s one and only Autism Advocate. There is also an endless amount of information available already about the different options (if any) that are available to your child in terms of Autism Early Intervention programs in your area.

As I have already written about the Autism diagnosis process in other Hubs today I just want to deal with living with Autism in the longer term. So what is it really like when your child has had a diagnosis, you have gone through the stages of coming to terms with the Autism diagnosis. You are now most likely to be just living from day to day on an emotional rollercoaster that you can’t get off of. If you are anything like me then that probably means you regularly alternate between being a warrior parent and just feeling so tired, frustrated and continually close to burnout. The only plus side though is when you find yourself having to continually fight tooth and nail to try to get even basic services for your child you do eventually become as tough as old boots.

These days I find that refusals, condescending letters and frustrating progress reports just flow off me like an avalanche cascading down a mountainside. I may feel defeated for a day or two but then I heave the boulders off myself, get up again and I just bounce back with a new plan. Where do I go from here now?

Sure yes I have many days where I do feel walking over to the corner of the room and banging my own head off the wall two hundred times. In my dark days I do absolutely often think that yes this really is the most constructive thing that I can think of to do today. On these days too I do actually wonder what else is left that I haven’t already tried? Haven’t I already read about every Autism Therapy known to mankind and I have even managed to research a few others too. Haven’t I also tried every odd suggestion that I have heard about and I have even, as suggested tried to fine tune them to suit my child as best as I could.

Yes I have also poured over demonstration videos, leapt around my front room like a hyperactive Sesame Street character, tickled my child half to death (to supposedly encourage his joint attention play skills). I also had the decorators in and they have now wallpapered my entire house with the new ‘must have autism look,’ i.e. the PECS and Visual Schedules design.

Yes I have also borrowed, begged and stole to pay for new experimental therapies and done everything they have suggested in the books but unfortunately I am still nowhere near conquering Autism. At this stage I have to still concede that while my child is coming on very, very slowly he is nowhere near being ‘indistinguishable from his neurotypical peers,’ and the more time that passes the more I realize that it is getting very unlikely that he ever will be.

So it would seem I have still not defeated the autism. We are not yet one of those families that you see beaming out at you from another ‘Autism Success Story Website.’ There these families always are resplendent with whitened teeth and momentous smiles while proclaiming that they can actually all live happily ever after now that they have vanquished their child’s autism. Now every time I read another one of these ‘true testimonials,’ I can’t help but see Walton’s mountain in my head. The little voice in my head usually whispers, ‘remember how it always worked out just fine too every week at the end of every episode of the Walton’s. Maybe if you attend church this week and finish all your chores on time then just maybe you can be that smiling happy family too?

Most parents of a Special Needs will also know what I mean when I talk about those tough nights staring up at the bedroom ceiling well into the dawn hours worrying about your child’s future. Will my child ever talk? Will he ever really be able to cope with mainstream school? Then just when you feel that you might finally be able to nod off you hear an alarm siren blaring in your ear. You groan and yawn when you realize that yes it really is 6am already and now you must get up and prepare your child’s Gluten Free Casein Free meals for the day ahead.

Some days I walk around as if in dream not really being able to believe that my days now are filled with visual schedules, handling meltdowns, negotiating with therapists and apologizing that I didn’t always manage to do the whole sensory diet every day this week because I was so tired and my son just obstinately refused to cooperate with me on so many occasions.

Then I decide to take my child to the park and that’s when the real gravity of my situation hits me like a sledgehammer. Sometimes my son might stand in the corner of the playground flapping his hands and staring intently at the red plastic top on the railing. Other kids try to dodge past him and the occasional one looks at him in astonishment before continuing on playing and laughing with the other children.

There’s often a group of mom’s sitting in the corner chatting happily about things that I just can’t even comprehend anymore. Everyday occurrences like Jamie still not putting his football gear into the wash basket or Sophie who is well past one now and yet she is still drinking from her bottle. I try not to stare at them but somehow I just still feel so envious sometimes. If only my son could be like one of their children even if it was just for a day. Just so I could hear what my son’s voice really sounds like when he speaks and just so I could get some real idea of what goes on inside his head. Imagine having a whole hour of my son telling me about himself and just being able to say what he really wants to do today without me having to guess.

Then I realize how neurotypical I am sounding today and I remember what I was like when I was my son’s age. I loved my own company too and it was such great fun wandering through the fields picking buttercups and talking to my imaginary friend. Life only really started to get hard when I had to deal with other children and had to try and figure out how to navigate the neurotypical world. Wouldn’t it have been bliss if I could only have been allowed to enjoy the solitude and simplicity of my own world for longer. What had been the hurry to try and be something I would never be i.e.neurotypical.

You see at the end of the day my son is very loveable and unique and he has also given me the greatest gift of all. It was the one thing that I had been searching for all my life i.e. the answer to who I really am. The reason I had always seen the world the way I did was because I have Aspergers Syndrome. Now I know it was never having Aspergers Syndrome that made my life so difficult it was just the not knowing that I had it. If only I had known that I didn’t have to be ashamed of being different growing up I just had an autistic brain that saw the world differently to other girls. At least my son would never have to pretend or hide so for now while he is still happy shouldn’t I just cut him some slack and enjoy him? The stress of being autistic in a neurotypical world will come to claim him all too soon…



IS Diet the answer?

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Comments 17 comments

SandCastles 4 years ago

Wonderful article. I have diagnosed Asperger's Syndrome. I can relate to you description of being a child content to explore her world, loving her own company.

I've met a lot of people that are offended when you bring up the topic of Autism or Asperger's. I think I offended someone when I mentioned that people with Asperger's Syndrome have sensory issues. In my opinion, I think they thought I was calling them an Asperger Person and took it as an insult.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks for your comment. Yes everyone deals with AS in their own way and some people don't want to know if they have it or are in denial or feel they don't want others to know, so its usually best to say nothing I have learned that the hard way. That's life and everyone must make up their own mind about it. But it does upset me when I see kids who really struggle because it has been decided for them that they don't need a 'label,' but unfortunately that also means they don't get any help or people see them as being oddballs when they are not really. They just have a different brain and they see things perfectly normally when you take into account that's just how any autistic person would see it.


indiaguerita profile image

indiaguerita 4 years ago

Just finished reading. I was getting very sad until I read the last paragraph. It took me a long time to come to accept the fact that my son wouldn't be like my two other "normal" children. I never tried the diet...and never will...it just seems like child abuse to me (only joking). My husband and I did ABA therapy with Ray and it was amazing. He is not cured (I don't believe that Autism is curable) but he is much better.

Have you ever read the article "Welcome to Holland"? Here's a link to it: http://www.our-kids.org/Archives/Holland.html

I loved that little article. It changed my outlook on pretty much the rest of my life.

Hang in there...


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks for your comment. No we haven't done ABA, I did a lot of research into it and have talked to other parents who have gone that route and like everything some say it was great while others who attended a local ABA class took their kids out of it because they say their kids regressed on it. So like every other therapy it can go either way. Personally as an Aspie I know I wouldn't have liked ABA myself and my son is so like me in many ways that I fear he would really rebel against it. A lot depends on level of autism and personality too of course. Thanks I will look at article link and I dunno about diet but I went on a GFCF diet myself for a few months and am now trying to stay GF free because I find it definitely affects me physically when I eat Wheat. Take care.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

http://www.our-kids.org/Archives/Holland.html Just read your link indiaguerita, thanks that sums up living with autism in a nutshell definitely.


eHealer profile image

eHealer 4 years ago from Las Vegas

What a beautiful article. Labels aren't as important as the individual. Everyone is different and all relationships deserve the time to build them. Very informative and I know this will help many people. Thank you for the excellent info and for sharing your personal experiences. This is so important for others that are sharing your journey.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks again for your kind comment, writing articles like these help me too, writing has always been my best therapy for getting it out!


midget38 profile image

midget38 4 years ago from Singapore

A beautiful sharing...and I believe it will help many to empathize with the condition. Thanks for sharing this, and I do too.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks for your lovely comment, it is appreciated.


Lastheart profile image

Lastheart 4 years ago from Borikén the great land of the valiant and noble Lord

thewritingowl voted up and the rest. I am very proud of you. The best information about any theme is from those who really knows what it is because they experienced it. I will definitely share this article. Blessings to you, your people and the readers!


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks very much for your comment, for me writing about my experiences is a great help and if others benefit or get something from my writing that makes it even better.


indiaguerita profile image

indiaguerita 4 years ago

Yes, I know ABA can definitely go either way. I will not lie...it was a nightmare while we were going through it. Like the old saying goes: It'll get worse before it gets better. Ray rebelled against it...hard. He was forced to use his words rather than constantly crying and us pulling our hair out - guessing desperately at what the problem was.

In the end, it paid off for us. I have read a lot of first-hand accounts of the CFGF diet having a profound effect on behaviors. The thing that I don't care for is the group of people who try to convince distraught parents that their child will be cured if they use any type of treatment for Autism.

I love the article "Welcome to Holland". It changed my outlook on life, for the better.

Great hub.

-Laura


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks for your comment Laura and I hope Ray is doing well now. I agree with you when your child is first diagnosed you are very vulnerable and this the time that you are most susceptible to grabbing at straws and trying a therapy that can just be hugely expensive and a rip off and now I have learned to always beware of, 'our child was cured of autism by using this therapy.' I know myself you can cope with being autistic and make great strides with the right intervention and you can learn how to blend into the neurotypical world very well but your brain is always going to be an autistic one and it will never change its biological structure because of any therapy and suddenly become a neurotypical brain.

I suppose whatever route you go down it isn't going to be easy but I just find having Aspergers myself I find it hard personally to force him to do something that I would have rebelled strongly against myself because my autistic brain just doesn't get it but I know too I am just too soft at times and I am trying to work on that! We all just have to struggle on anyway, that's all you can do at the end of the day.


Val Swabb profile image

Val Swabb 4 years ago from South Carolina

Thank you for your story. Well written, and shows just what both living with AS and having a child on the spectrum is like. And Thank you so much for pointing out that AS didn't cause your problems, it was not knowing about your AS that did. I am in the same boat as you there. If you ever need some extra inspiration, read my hub about 'healing autism'.


thewritingowl profile image

thewritingowl 4 years ago from Ireland Author

Thanks a lot for your comment I will certainly read your Hub about 'healing autism,' as soon as I can.


Joy56 profile image

Joy56 3 years ago

I LOVED THIS.

We have a grandson who has autism. It has devastated my son and his wife, and they have moved to Florida, to try to get some help with this condition. Nothing has worked so far, and acceptance is slowly the only thing they have learned. They have spent thousands on different treatment, and their own personalities, have been totally changed.

Keep writing, keep helping others, i was amazed at the little girl who started to talk after the treatment. If only my grandson could tell them, when he was in pain, why he was sad or happy...... things would be much easier. hugs to you from me over here in Ireland..... i think maybe you are in Ireland too, is that right.


thewritingowl profile image

thewritingowl 3 years ago from Ireland Author

Thanks Joy56 for your kind words. Yes you'd be right I am in Ireland too. It is a tough road definitely for people coming to terms with an Autism Diagnosis. Also it is very unfortunate that it is during this time when parents are at their most vulnerable i.e. when they have just received an Autism Diagnosis that there are those out there who are making a very good living out of the Autism Industry who will tell parents that certain treatments that will always cost thousands are going to be the miracle cure.

We've all been there though and it is part of the acceptance journey too. Unfortunately too more often than not from what I have heard and read many are often disappointed with experimental treatments. Being autistic isn't necessarily all that bad either as it has made me who I am but I understand too that it is different for everyone and it depends where you are on the Autistic Spectrum too.

My son unlike me has classic autism so that is very different in some ways to my own Aspergers (but in other ways he is very like me too). Please keep reading my articles too as I have written a good few on this subject so far.

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