Autism support 1 – What advice would you give to somebody who child has just been diagnosed with autism?

Advice for autism parents

Advice for autism parents

Our son was diagnosed with autism just under five years ago. You can read about it here

During and after his diagnosis my wife and I found it very hard. One reason, perhaps, is that we had little contact with people who had been raising children on the spectrum. Sure we knew people like us whose kids had just been diagnosed but were not in touch with people who while still on the autism journey were a long way down the round.

So I thought it would be useful to start a conversation on our Facebook page AutismTalk asking one very simple question – “What advice would you give to somebody who child has just been diagnosed with autism?”.

Firstly the results were amazing so we have decided to run a blog post sharing some of the responses with our readers. But it would be great if you could share any advice you might have in the comments section below.

One reader shared “Never give up. Everything takes time, and in the end every moment is worth it! I was told my son wouldn’t do this, or wouldn’t do that, and he has overcome every obstacle they said he wouldn’t, and every day he does something I was told he’d never do. Like talk. 5 years of therapy, in and out of school, and he speaks!”

Another said ” One day at a time and take thw good with the bad. My son has jus had a massive meltdown bt ten minutes later impressed me soo much because he randomly brought his juice PEC to me because he wantsd a drink… first to he ever communicated off his own back. Its an emotional roller coaster. I was crying half hour ago now were very happy proud and giving my son lots of love and praise!”

” A label is just that… It doesn’t change who your child it, it just gives you a direction on what you can do to help make their days/life easier”

“That people without an autistic child will most probably be ignorant to what autism means.. Don’t worry about there opinion on your child.. They will never understand. ”

“From a dads perspective stay positive and acceptance of the condition. Then move on and fight for everything”

“Remember to put yourself in your child’s shoes and always be patient. I always think to myself, if I’m anxious, how must he be feeling x”

“Don’t believe everything they tell you each child is different and they are capable of learning.. It’s called repetition. If you give them a break because they are autistic they are going to catch on. But also be patient as certain things can set them off. Just don’t do things you know is sure to upset them.. But discipline is a must they are capable of understanding. Just takes more time and patience”

“EARLY INTERVENTION + Learn to be “at peace” with and “accepting of” your child just the way they are.”

“autism is a special gift their no different than anybody esle just special in their on ways .. Take one day at a time.. There will be good days and bad but you just got to stay strong . They will bring so much joy to your life promise..”

“Take the time to really, really observe your child, see where he struggles and think what you can do to help. This sounds so very simple and so very obvious but when you’re stressed, sleep deprived and struggling to communicate it’s harder than you think. Seven months after official diagnosis I’ve finally concocted some charts and aids that help my son understand the passage of time. Nothing else I saw quite fitted the bill – every child is different so try not to compare. Just work on building that bond and helping your child prepare for and cope with his world. xxx”

“It changes everything yet changes nothing at all. They are still your child and it’s just allowing you to change your parenting style to adapt to their needs to help them (and you) achieve theirs and your potentials! Stay calm and read as much about it as you can. Knowledge is power.”

“Don’t try and fix the child, fix the world they live in……it will all be ok, just dish out the love and it will all work out.”

“Don’t see the diagnosis as a punishment as I did at first See it as strength training for your character. You will discover that you can do and endure amazing things for the sake of your equally amazing child”

and finally even though there were many more “Don’t forget to laugh. Things will get tough and you’ll want to scream, shout and cry. But if you can stop smile and laugh about the little things it’ll help give you a different mindset to tackle it. Celebrate the achievements and be realistic about the weaknesses. Give yourself time to grieve and understand.”

As I said please feel free to add your own advice below.

Thanks in advance!

What Autism Myth irritates you the most? Check out the pat hates of our readers here

#AutismMyth

#AutismMyth

Yesterday I found myself staring at my PC contemplating that splendid waste of time and human effort called Twitter. (I love it don’t you?) During my saunter into the world of the half-crazed (have you seen the kinds of political opinions you get on Twitter?) and utterly obsessed (needlepoint as a treatment for fibromyalgia?) I actually came across something very interesting.

Yes, I know, odd isn’t it?

So what was this amazing thing? Well the excellent Tweep (I know the lingo you see) Autism on the Hill was taking part in a hashtag camapaign called #AutismMyth. Please do follow them to check out their brilliant series of tweets on the subject.

Anyhow I prompted me to ask the question both of myself and of the AutismTalk page on Facebook which was “What Autism Myth irritates you the most?”.

The results were fascinating. So I though I would share just a few with you.

The most “popular” if that is the right word was Kerrii’s share “They don’t look autistic!!!!!”.

Christina said “They will grow out of it!”

” Your Son will struggle socially & wont have any Friends!!!. He wont be very good at ball sports!!!! & he will struggle with day to day life!! BULLSHIT!!!! My Son is amazing! He has a best Friend who isn’t Autistic! They look out for each other. He tries his hardest at everything, just like any other child does! Anyone that thinks they can’t… Or gives a dirty look in the middle of a melt down…… That irritates me the most!!!! These kids are completely Amazing!!! xx” was Kellys comment.

Bobbie commented “A woman at church told me that she knew someone whose child was autistic, and the parents put him/her on a specific diet, and he/she was “cured,” and I should put my son on it.”

Sarah dislikes “He’s not autistic just naughty!”.

“”oh well he’ll grow out of it.” And “well they didn’t have stuff like that when I was young, it’s just an excuse.” Im just like well they didn’t have the chemicals and pesticides and cleaners and toxins that we do now. We are poisoning ourselves and the population is growing. I personally believe that is the reason autism and downs syndrome and other genetic mutations are on the rise.” was mentioned by Ashley.

“That people with autism need pity. They do not need you to feel sorry for them. All kids struggle with certain things in life, my son is no different. It doesn’t mean he isn’t smart and that he isn’t a great person or that he is not going to live a happy and fulfilled life!” was from Stacey.

Adam brought up “Vaccines can cause Autism”.

“That it’s bad parenting and my child just needs a firm hand!!! ” was from becky but echoed by many others.

And from Amanda “That they will out grow it. And I shouldn’t let him get away with his meltdowns. Eerrrr. I love my son and wouldn’t trade him for anything but I wish the people that say these things could walk a mile in my shoes just for even one day.”

Jenna picked up on one of my hates ” That autistic children aren’t affectionate”.

There were many more but these are just some representative examples. Can I thank everyone who took part it was a very useful exercise.

I’d now like to turn it over to you. Please use the comments section below to share the Aetism Myth which irritates you the most and why.

Many thanks in advance.

RogerKulp That autism is not a disease or disability,but a “difference” and “diversity” we need to accept.This is every bit as much of a lie,as the belief vaccines cause autism.This myth belittles and ignores the suffering and struggles of those with autism and intellectual disability,or those,like myself,who have regressive autism,and many medical problems,and other disabilities,related to inborn metabolic and/or immune disorders.
JenniHart I’m sick of people thinking my son is really good at computers because “thise type of kids are really good at one particular thing”.
seasonalmagic My son does not react to a lot of stuff.  In the past, he has gotten hurt and not really reacted to it.  One day, he hit his teacher, who was trying to sit him down for classroom treat.  It was ice cream.  So I watched him.  He stopped eating, so I took him to the doctor, who told me to take him to a dentist.  I did.  The doctor ask me if my son was reacting to pain.  I say ‘NO, my son is autistic.  He has never really reacted to pain.  My pet pea is that people, especially medical people always asks is your son in pain.  I have to tell them the same thing.  I finally ended up taking my son to another dentist.  The Lady looked into his mouth, about 45 seconds and told me, He has six cavities.  I was floored and a little relieved because we had found the cause.  The day after we got his teeth taken care of, he started eating a lot.
mckinj RogerKulp You mention mitochondrial disease and ‘the cocktail’, I’m interested in this because I have seen articles where autism, CFS and Fibromyalgia are all mentioned in connection to mitochondrial disease. I have tried buying all the elements mentioned in this cocktail and unfortunately some seem to disagree with my stomach. Was wondering if any company has put all these elements together into one capsule so you don’t have to swallow about 6 capsules.
ElizabethDuPree I hate the myth that vaccinations cause autism.  There is not only no valid scientific evidence to support this claim, but also they have proven time and time again that there is no correlative link between any vaccines and autism.  Also, thimerisol, the preservative they say causes the autism, hasn’t been used in those vaccines since the 90’s, so what explains my son’s case?  He wasn’t even born until 2003.  Vaccinations are vital to the health of your children and the children of others.  Please do the research before believing anything you read on the internet or hear from a celebrity.
AmberStidam “He doesn’t like look autistic”,” all he needs is more discipline”, “its just lazy parenting”, ” well you shouldn’t have vacinated” , “people are just labeling their kids to make excuses for bad behaviors”, ” autistic kids always end up locked away”, “autism can be cured by good discipline and diet changes”…. I could go on and on with things that bug me in regards to autism comments and things people actually believe and say.
MichelleBarger I always get irritated by people saying he don’t look autistic. Ive also been told when he was younger he wouldn’t make friends, my son has friends normal and autistic like he is.
kaykay18 When people talk to those of us who are higher functioning and tell is we just haven’t tried hard enough to “ignore” our tactile sensitivity.
RogerKulp SeniaCastenada,I am not surprised.I was diagnosed with autism way back in 1971,back when autism was blamed on bad parents,and “refrigerator mothers” in particular.Little has changed.A lot of it is still “blame the mother”.If they can’t do that,they will say the medical problems are just a part of autism,because they don’t know what they are.Too few doctors keep up with the advances in either autoimmune or metabolic diseases that can present as autism.I have lived my whole life with all sorts of unexplained medical problems.I have nearly died a number of times from either acute infection or episodes I now know were undiagnosed metabolic crises.My mother and I spent decades fighting apathy and abuse from doctors.More recently,it’s been another long,hard struggle for me to go from one doctor to another in the last five years,to accumulate abnormal test results,that no doctor could interpret.I have just seen two doctors who are probably the top experts in the world,as far as metabolic and mitochondrial autism is concerned.From them,I now have a diagnosis of a genetic disorder of folate metabolism,as well as a probable diagnosis of mitochondrial disease.I need some more mito tests,but there is enough evidence to start me on the cocktail.
SeniaCastaneda My worst comment came from a developmental pediatrician and he said that my daughter wants attention and leave her alone in a room when she had a tantrum even after I told him she inflicts self pain during her tantrums. He was stuck on the fact that i was a first time mom even though I have raised my brother’s children. He sent me to his nutritionist that gave her a diet of nuts and fish without an allergy test. My daughter is extremely allergic to all nuts and peanuts as well as shellfish. I never went back again. My daughter was 3 at the time. She’s 7 now.
lele49 I agree and until they have one or know someone who is and has spent with them and gotten to know about it, they need to either read a book or shut the hell up
lele49 Don’t pay any attention to those ignorant people. Your age didn’t have anything to do with it either there are plenty of women in their 30s that have children. It’s just happens. I had my son at 22 and he was a healthy 8 lbs 4oz.. He was diagnosed later in life until then,I thought he was just delayed I got him into every program I could think of and he’s better for it. He now has a job and he has friends.
lele49 My most hated “myth” is, “they’re not employable.” I beg to differ. My son is 26 and he has a job, he’s very affectionate, he will not grow out of it and no, he doesn’t need discipline. Until these people have a child of their own, they will never understand
FaithVelmaAlkire the one I hate is that i his mother did something to cause this.  I’ve heard it is because I didn’t get early prenatal care for my forth child while in the middle of changing ob/gyn’s after loosing previous child to a still birth.  uhm sorry I followed proper med procedures even if our first ob/gyn apt didn’t happen till the 4th month because of them not having an opening.  My gp was quite capable of listening to heartbeats and measuring and giving me an approximate due date and prescribing all the right vitamins till they could see me.  thank you.  it is not because I didn’t breast feed (I physical can not do so)  it is not because we are not 100% organic or eat ______ (fill in the blank on the food I here several all the time) and it is not because of vaccines.  It may be because I was 33 years old when I got pregnant but still more a roll of the dice then anyone’s fault and I’m tired of people trying to assign blame.
RachelDawnNorris Hes not the full ticket! Is my autism myth hate, my son is fine not crazy, stop telling children rubbish like that!
some people need to read a book maybe! Or at least ask a question before being so stupid.
RogerKulp That autism is a difference to be celebrated,not a disability.

Autism Heroes. Role models for people on the Autistic Spectrum. Please share the names of those people who are role models for the autism community.

An autism hero

An autism hero

This blog post is a bit more than just a list of famous people and celebrities who have been diagnosed with autism or are now thought to have been on the autistic spectrum. Indeed both Mozart and Albert Einstein are though to have been autistic.

Rather it I am trying to put together a list of people who for whatever reason can be described a role models for our community.

The list is in no way complete so I would ask you to share the details of your heroes in the comments section below!

My first is pretty obvious Temple Grandin is an inspiration to pretty much everyone in the ASD scene. You can now follow her on Twitter. I do!

Daniel Tammet is a best selling author of “Born on a Blue Day” which tells his story. He moved between the world of maths and literature effortlessly . Indeed he learnt Icelandic in a week.

The name Ari Ne’eman may not be well know to you but he has been at the forefront of people with autism speaking for people with autism rather. He tweets on a whole range of issues!

Daryl Hannah was one of the first celebrities to discuss their diagnosis of autism openly. Part of the process to breaking down the stigma associated with ASD and helping to create autism acceptance.

Vernon L. Smith hold the Nobel Prize for Economics. Which pretty much says it all about how far people with autism can go!

But it is not just people with autism themselves I would like to honour. Anna Kennedy (who was awarded an OBE by the Queen) who is herself an autism mun has been a indefatigable campaigner for autism awareness and acceptance. Not just that she has founded two schools, a college, a respite home for people on the spectrum.

As we are based in the UK I would also like to mention an autism researcher who is Professor of Developmental Psychopathology at the University of Cambridge. As many of you will know Simon Cohen-Baron is a name which is instantly recognisable to many of us in the autism world.

On a personal note I would like to mention the two teachers who run the ASD unit in my son’s school. I won’t mention their names to protect their privacy. But if you are reading this I would like to thanks you both from the bottom of my heart.

And finally. My son himself. He battles everyday and often he wins. My wife and I are very proud of him!

So please do feel free to tell us about your autism heroes in the comments section below!

If you could write a letter to Autism what would it say?

I support Autism Awareness

I support Autism Awareness

I awoke a few hours back after sleeping deeply and but having taken ages to get to sleep.

I try to write a blog post a couple of times a day but this morning my brain just drew a blank. I’m blaming the humidity. But it does happen.

Anyhow I was having a look through one of my twitter feeds (on multiple sclerosis as it happens) and came across the most interesting question? If you could write a letter to multiple sclerosis what would it say?

I found myself pondering that question but also how it could apply to autism. So I tweeted out the question on my ASD twitter feed as follows:-

To which I received a reply almost instantaneously

And you know what? I get totally where is is coming from?

But what about you? If you could write a letter to Autism what would it say?

Either share on the twitter thread or in the comments box below.

Thanks very much in advance.

Autism : Please help the AutismTalk Facebook page


Tweet: Help us keep an #autism community alive from  Please R/T @AutismTalkASD http://ctt.ec/ShWUX+

As some of you may know a few months ago the Facebook page AutismTalk was systematically trashed by internet trolls.

You can read a little more about it and autism hate speech here.

Since the we have been working hard to rebuild this ASD community but with very little success.

We would therefore as for your help. Would it be possible for you to share this pahge and the imahe below with every one you know on Twitter and Facebook.

Many thanks in advance!

AutismTalk

AutismTalk