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Leave a comment Posted on January 29, 2014March 12, 2017 Autism, Patient Talk

Suzie Goes On An Aeroplane – a new book for autistic children to help with taking plane flights and aircraft travel

Suzie Goes On An Aeroplane

We’re lucky! Well in one sense that is. Our son John is one of those people, even with classic autism, who actually like aircraft travel. (Though the same can’t be said for aircraft food).

This is rather useful as his grandparents live the other side of the world.

But for many people with autism and parents of children with autism this is not the case.

Charlotte Olson has produced a new book aimed at autistic children and their parents with the objective of helping the deal with plane flights.

She has written a micro guest post for us.

Olson shares ” Join Suzie as she takes to the skies and goes on her first Aeroplane ride.

A simple story to help a child who may feel anxious about going on an Aeroplane, with colourful pictures and written in a way that a he or she can process and be able to enjoy the story in a fun way.

So buckle up and enjoy the Aeroplane ride.”

You can find out more about the book here http://www.suziebooks.co.uk/aeroplane.htm

Obviously aircraft flight may prove problematic for many with ASD. So we were hoping you would consider using the comments box to share your experiences with autism and aircraft flight! You might want to consider the following questions when framing your comment:-

a) How do you or your loved one react to airplane flights?

b) Do you take aircraft flights these days?

c) How do you deal with problems with aircraft flights?

d) What is the overall affect of autism on your ability to travel?

e) Would a book like “Suzie Goes On An Aeroplane” be useful to you?

Thanks very much in advance.

Leave a comment Posted on January 25, 2014March 30, 2017 Autism

Suzie’s Toilet Time. – a book for autistic children to help with toilet training.

Suzies Toilet Book

A few days ago we ran the second in our series of blogs on autism and challenging behaviour For this blog we looked at toilet training for children with autism. You can check out the original blog here – https://patienttalk.org/?p=2418.

Most of the discussion took place on our Facebook page AutismTalk (https://www.facebook.com/AutismTalk) and one commenter mentioned a book she had written on the subject. Charlotte Olson, the author, has a micro blog introducing us to Suzie’s Toilet Time.

She writes:-

“Enter the bathroom with Suzie and become aware of the different textures, lighting and sounds in the bathroom.

From the bright tiles, to the fluffy carpet and the noisy sounding flush.

A simple story to help any child who may be anxious about going to the bathroom and using the toilet.

If Suzie can do it, then so can you.

Please take a look at my website, here you will see further titles.

www.suziebooks.co.uk.”

So drop round and check the book out. Please drop back to this post and let us know how useful you found the book!

59 Comments Posted on January 21, 2014January 14, 2018 Autism, Patient Talk

Autism and vaccinations! Could autism be caused by vaccines? Have your say at our poll! And check on the discussion!

Autism Awareness

The debate about vaccinations and autism has been raging for over a decade now. It is a highly contentious issue with very strong feelings on both sides.

We would like to take a “snapshot” of the current views of our readers on the subject. To this end we have created a poll which we would ask you to take – which you can find at the end of this post.

If you wish you can use the comments section to expand on your views and thinking in more detail. That being said we do ask that you treat the views of others with respect and be charitable to comments that you may not agree with.

Many thanks in advance

SpeaksAspergian	I was diagnosed with Asperger’s/autism when I was 58 years old. I am a geneticist and a conservation biologist. I would love to say more about myself, but I come to this conversation not even knowing what phrases are acceptable. I come to a community that I wish would accept my differences, because I honestly do not understand the politics of how we are supposed to talk about autism. ALL that being said, I would like to write a wee bit about the genetics, so that we are clear on what is known, which is far from enough. I apologize in advance if my phraseology is politically incorrect, but my limitation is this: I try to be pc, but I am hardwired to communicate in my way. There are clearly, and understandably, misunderstandings in genetics which I have noticed in the comments. Here is some big picture stuff: Autism falls into the category of “quantitative” genetics. This means that there are many, many genes involved, each with a small effect, each with a small contribution to the whole “phenotype” that we call autism. (I use the neutral scientific term “phenotype” instead of disease or syndrome, even though I believe that these other terms may be used correctly in appropriate context.) What this means is that autism is NOT like cystic fibrosis or sickle cell anemia, which are human diseases caused by a mutation in a single gene. Autism is literally based on a spectrum of genes, many, many genes. I cannot stress enough that many genes are involved and that we need much more scientific research. According to statistics, autism has a substantial genetic basis AND is influenced by environment. Both are important. Here’s a personal example: I was conceived in a little house beside a golf course in the 1950’s (read: pesticides without modern controls). Because I am the first person in my family “with autism” (sorry to those who dislike the “with” phrase), and because biological development is altered in autism, I have asked, could those chemical toxins that my mother may have breathed over 9 months TIPPED my genetic cart (the genes that were there already in me) in such a way that I developed Asperger’s? Maybe and maybe not. This question cannot yet be answered. We don’t know because it is possible that my Asperger’s (may I speak it this way?) would have developed anyway! Many little genes of small effects can together make a big effect. What about vaccines? I have not read the actual clinical trials, but I accept the reported result that there is not a statistical link. This does not mean that I don’t think there is something else in our environment TIPPING THE CART for many people. We are all carrying genes that matter in autism. I say this because of the very sophisticated “genetic architecture” of autism. Autism as a phenotype may be a modern syndrome, but its genetics have evolved in our human population over a very, very long period of time. We need research as well as _______(the pc word for treatment … anybody?). My hope is to help bring the science of autism genetics to the people. This is certainly not an easy task, not only because to render that science accessible will take much work, but because I am not wired to be politically correct. My hope is that the controversies, protests and boycotts will give way to a unified research front going forward. My hope is that readers will accept my limitation in how I use language, and let me write about genetics for the general public without criticizing my Aspie inability (am I wrong to use ‘inability’?) to use language phrases that are not my own. Thanks to all who read and accommodate my language. Thanks to my Creator, that I can write, for my identity is in my soul, not my “autism”.
MarkAllen2	EliCabelly amandapowell1 klhembree diseases are coming back because the vaccines contain LIVE viruses that …….. wait for it………SHED……….thats why the outbreak in canada last year was directly linked back to a vaxed kid………..herd immunity???? what about china……they have almost 100% and they are still getting outbreaks???? you are one to talk calling people uneducated……….you should realise that when you point the finger at someone there are 3 fingers pointing at you 😉
MarkAllen2	EliCabelly klhembree once again no citation for your dribble eli
MarkAllen2	EliCabelly GinaGeer you keep bleeting the same talking point eli…….put up some evidence for your content or shut up…..ffs what are you a big pharma or govt troll??? you know how i know your full of crap???? because courts in the US and Italy have RULED that there is a connection but the govenments have sealed the cases so the public cannot get the damn evidence in the public domain ………. vaccines are neither safe nor effective and i bet you can’t find us a study to disprove that statement 😉
MarkAllen2	HeatherSaggers please do the history…….these so called deadly (media fearmongering) diseases were already in decline of 80-90% BEFORE their various vaccines even came into play…….something the media and establishment always forget to mention……also in the US…….whats doing more harm to our children……measles or the mmr vaccine??? in the last 10 years how many measles deaths??? compare that the mmr vaccine related deaths over the same period???? the tv (a.k.a propaganda box) does not always give you the truth………..enough said 😉
MarkAllen2	MissyAvey it does if they are directly exposed to the toxics in their environment……swallowing paint might do it, or even a tube of fluoride toothpaste or mercury from a broken power saving lightbulb, pesticides/round-up…..theres tonnes of crap in our childrens environments now – a lot more than 50+ years ago…….before the fda and epa started rubber stamping everything……..do you actually think parents watch their kids brush their teeth 100% of the time? what does it say on the toothpaste packaging if swallowed in the US??? Contact the POISON CENTER and lets keep in mind and in perspective………how many unvaxed kids have autism? maybe 1 in 25,000 compared to the 1 in 50 in the vaxed lot? dont take mine or anyone elses opinions as gospel – but do keep an open mind and dont buy into the medical establishment……they don’t profit of healthy people do they?
MarkAllen2	Donna Loveless totally agree donna…….the spectrum is so broad now that it has become near impossible to pin point a direct cause…… what i don’t buy into is the government (new zealand) saying that the majority of autism is genetical…….this is a straight out lie, genetics at most only accounts for no more than 30%, the birthing process between 5& & 15% ……. that means that anywhere between 55% & 65% is environmental!!! Vaccines can and has caused autism, this has been verified in both US and Italian Courts where the Judges have ruled just that – the fact that the government then seals the case so the public cannot get access to the evidence, to me, is their submission of the FACT! However, like i said before, the spectrum is now so broad – and basically each case and child is different/unique – to me the environmental factors explains the rest………..toxics/poisons such as pesticides, herbicides, fluoridated water, lead, mercury, aluminium. round-up, lead, arsenic, etc etc the list goes on and on which to me, at least, accounts for the wide variety of symptoms that fall on the spectrum……….my personal experince with one of my boys (and only 1, the middle of 5) tells me that it was his vaccine that triggered/caused his autism……i have home video of him 3-4 months before his shot………..alert, verbal, responsive……..i even have a plunket nurse report stating that she had ZERO concerns about is ‘development’ just 1 month prior to his shot…………it was a very slow regression for my son, being with him everyday i wasnt the one to notice and raise the alarm bells…..rather it was my mother who visits every school holiday, every 3 months that noticed……the rest is history and the only benefit for my family is that this woke me the f%$k up and i now question EVERYTHING and if my question dont get answered i simply do not CONSENT to ANY medical/government/authority and NEVER WILL! My family – My choice
chellerae77	Both of my daughters were vaccinated. Same doctor. Same clinic. Same vaccines. One daughter, no problems. My other daughter, diagnosed with Autism. I’ve done so much reading on the vaccine/autism debate. However in my opinion, I have proof right in front of me of no link. Autism is not a disease to be “cured”. It a developmental/personality disorder that occurs in utero. Yeah I think genetics plays a big part in it too. Lots of Autism diagnosis in my family. Maternal and paternal. My daughter knows the diagnosis doesn’t change a thing about her. She knows she’s perfect who she is. I just don’t see any legitimate proof to the link. But I do not ever claim to be an expert. This is all just MY opinion.
thisHillfamilyisAusome	Shelly you have been misinformed! You should read up on blood born pathogens. Hep B can survive on most surfaces for at least 7 days. Anytime a person/child comes in contact with infected blood the risk is present. Yes, sex and sharing needles…….. Also sharing razors, toothbrushes, open sores, pricks from infected needles, instruments ect.
escentiallife	amandapowell1 yes finally you got it right …. You are GUESSING I could see why the idea came about because of when you notice the autism but you can’t go around deciding reality by guess. my nephew was claimed to have come down with the autism after his 4-6 month shots but I told them at birth he was autistic duh! not our fault no one can see it.
escentiallife	amandapowell1 no vaccines in my ancestors or myself, so why do most of us have autism? my children were vaccinated but not at birth and that is when the autism was obvious to their autistic mother (diagnosed at age2) My grandchildren got all the nasty crap like HepB and they are past age 3 with NO SIGNS of autism. anecdotes are not science but I will never believe the damage done by the vaccines is autism. there could a link because autistics tend to be more sensitive to and unable to detoxify as well as the allistic. I am for spacing out the vaccines for autistics and a couple I am against but it has nothing to do with autism. that is ridiculous!
escentiallife	amandapowell1 apparently …. according to you! I CAN’T BE METPMSL
patienttalk	ShelleyTzorfas Sorry I don’t quite understand what you are saying. Could you explain please?
ShelleyTzorfas	WE watched in horror as towns that never had Autism before had a child or 2 suddenly Autistic because the US passed a law blocking Your right to sue a vaccine maker in regular court and kids went from a few vaccines to more than 80. 1991 hit hard -it was the year they began vaccinating NEWBORNS for a disease they could not get-Hep B, a mad science experiment as it is spread by sex or IV drug (Sharing) use. This controversy among the pharma/med industry did NOT begin a decade ago- It began in 1991-some say the 1980’s. In the meantime if you really want kids to recover;http://www.amazon.com/Recovering-Autism-ADHD-Special-Needs/dp/0988853108
LowellHubbs	EliCabelly Donna Loveless The toxins were removed from vaccinations over a decade ago? Have you ever read the vaccine ingredients list? Was the only toxin you know of, Thimerosal, (mercury)? I think you need to start doing some actual and independent research. What about aluminum adjuvants and vaccine contamination? Vaccine Ingredients http://novaccine.com/vaccine-ingredients/ Vaccine dangers: Bombshell admissions from CDC’s 1999 Epidemiologist There is absolute confirmation of the following health anomalies that have been plaguing U.S. and global population children’s health before the age of six, now and for the last two decades. Degenerative and developmental disorders Renal disorders Elevated risks for disorders such as: Autism, sleep disorders, and speech disorders The unfortunate truth finally has been revealed that the U.S. CDC and others knew about mercury in vaccines causing Autism back in 1999 and have been misleading us scientifically ever since! It does not get any more criminal than that: conspiracy! And, that’s not on the part of ‘conspiracy theorists’ either; it’s on the non-deniable, self-stated, admission of a U.S. government health agency, the CDC. Sadly, the same is still going on regarding vaccines. Currently, it’s repugnant, and no one is doing anything responsible to rectify it. Read more: http://www.sott.net/article/268185-Vaccine-dangers-Bombshell-admissions-from-CDCs-1999-Epidemiologist Facts, regarding the misleading claim that mercury, (Thimerosal), has been removed from vaccines. http://www.vacfacts.info/facts-regarding-the-misleading-claim-that-mercury-thimerosal-has-been-removed-from-vaccines.html Glutathione, Tylenol, Vaccine Adverse Reactions, and ASD http://www.vacfacts.info/glutathione-tylenol-vaccine-adverse-reactions-and-asd.html Vaccine aluminum adjuvant causation of neuroglial activation and neuroinflammation in the brain of patients with autism http://www.vacfacts.info/vaccine-aluminum-adjuvant-causation-of-neuroglial-activation-and-neuroinflammation-in-the-brain-of-patients-with-autism.html Callous Disregard Research http://www.callous-disregard.com/research.htm Do Vaccines Cause Autism? http://www.youtube.com/watch?v=6S1-LgYyjQg
LowellHubbs	The science speaks for itself, right here. Vaccine DO cause autism. Learn what the real, unbiased, and independent science that the CDC ignores and continues to ignore, is showing us. Clearly a situation with potentially more harm than good being done by vaccines. Vaccine aluminum adjuvant causation of neuroglial activation and neuroinflammation in the brain of patients with autism. (Numerous independent studies) http://www.vacfacts.info/vaccine-aluminum-adjuvant-causation-of-neuroglial-activation-and-neuroinflammation-in-the-brain-of-patients-with-autism.html Vaccination toxicity: The Zeta phase of MASS and “blood sludging”. http://www.vacfacts.info/vaccination-toxicity-the-zeta-phase-of-mass-and-ldquoblood-sludgingrdquo.html The Mechanisms of Vaccine Injury and Via Cytokine Stormhttp://www.vacfacts.info/the-mechanisms-of-vaccine-injury-and-via-cytokine-storm.html Vaccine Production With – Human Diploid Cells (aborted fetal cell tissue) http://www.vacfacts.info/vaccine-production-with—human-diploid-cells-aborted-fetal-cell—tissue.html Autism Spectrum Disorders Common Sense about Autism Spectrum Disorders.Autism has a number of causes – which means you can do something to help reverse it and improve the life of your child. http://www.health-reports.com/autism.html?engine=overture%21801&keyword=autism+resourceThe CDC Claimed To Epidemiological Safety Studies – Verses – The Independent Physiological Vaccine Safety Science http://www.vacfacts.info/the-cdc-claimed-to-epidemiological-safety-studies-ndash-verses-ndash-the-independent-physiological-vaccine-safety-science.html
EliCabelly	amandapowell1 kb7rkyHend200How mature and educated of you. I guess name calling is an accepted debate tactic for you.
EliCabelly	amandapowell1 EliCabellyklhembreeDiseases are coming back because people aren’t vaccinating their children. You fail at metaphor.
EliCabelly	GinaGeer There is no connection between autism and vaccines.
EliCabelly	amandapowell1 EliCabellyAutism is a genetic condition, with initial onset before birth. Everything you see after birth, with the social disorders and everything else, is secondary symptoms.
EliCabelly	AngelaGoodbody There is no link between autism and vaccines. You need to help him learn coping skills to deal with all the increased perceptions he’s trying to deal with.
EliCabelly	amandapowell1 kb7rkyAutism starts before birth. Autism is genetic, not from toxins or vaccines.
EliCabelly	amandapowell1 rachie79 Autism has no link to vaccines or toxins.
EliCabelly	unam You’re right, that is all you know. Autism has no link to vaccines.
EliCabelly	amandapowell1 HeatherSaggersAutism is genetic. That’s why it’s more prevalent in boys than in girls.
EliCabelly	amandapowell1 The toxins in vaccines do not contribute to autism at all. The actual onset of autism is before birth. What you saw at 12 months were secondary symptoms.
EliCabelly	Donna Loveless Autism starts in utero. Autism doesn’t match any other illness based on toxic exposure. The toxins were removed from vaccinations over a decade ago, and the incidence of autism hasn’t decreased. Autism isn’t related to vaccinations.
Donna Loveless	If I told you my child was neurologically damaged or brain injured by exposure to lead based paint, I would not be challenged, yet thousands of parents testify that they saw their children regress into “autism” (neurological injury) after vaccinations, and everyone is skeptical. Why? Political? Egos? Money? Parents of autistic children have proven that their children have high amounts of mercury, aluminum and other toxins (which are in the vaccines) in their blood. Many have been able to detox and reverse the autistic like symptoms. But still no one believes. Until real studies are done comparing vaccinated vs. unvaccinated we will never have a true perspective. What is everyone afraid of? Yes, I believe it’s possible there are different causes of autism… But if 1 out of 25,000 unvaccinated have autism and 1 out of 25 vaccinated have autism, we can see the problem. The autism “epidemic” we have today did not start until the vaccination schedule increased in 1990. The more vaccines, the higher the rates of autism. It’s really not so hard to figure out…… But somebody doesn’t WANT it figured out. Hmmmm.
ConcernedMom1	amandapowell1It’s such a toxic world we live in. Sadly, the chemicals in our mattresses don’t help either. They are most toxic…and contribute hugely to Crib death annually. Seems more is against our raising healthy children than is for…see this: http://www.thecauseofsids.org/Cause_of_SIDS_found_by_Jane_Sheppard.htm
amandapowell1	kb7rky I relied on my doctors and my child did not have autism until after her 1 year flu shot. I educated myself then and found vaccines are just a useless money making ploy. They don’t prevent disease. never have and never will…
amandapowell1	kb7rky Hend200 you are mean Kb. and uneducated
amandapowell1	EliCabelly Hend200 she said that because you were talking about herd immunity, a very uneducated thought
amandapowell1	EliCabelly klhembree So I guess if I don’t bathe then you are dirty and stink EliCabelly? or if I don’t take my birth control pills you will get pregnant? Herd immunity is just heard immunity and nothing more. Vaccines don’t even prevent disease. Read up on the history of vaccines. Diseases were leaving society when the vaccines would be made. The diseases that never got a vaccine made for them left society just as quickly as the ones with a vaccine made for them and they didn’t return like the ones with a vaccine
amandapowell1	EliCabelly Autism is not just developmental delay. It is a social disorder and my child did not have this at all until 1 year old.
amandapowell1	rachie79 Actually there are cures for autism that work for most kids if tried. One is getting the toxins out of their bodies. Guess where the toxins came from? You guessed it… their parent’s vaccines or their own. Sometimes other places
amandapowell1	HeatherSaggers Ask your husband if he was vaccinated. What about his dad? there you go. Your family is definitely sensitive to the vaccines and they did cause the autism in your family.
amandapowell1	The toxins in vaccines are a large contributor to autism. I don’t think they caused my daughter’s autism all by themselves, but I also don’t think she’d have it today without them. Autism didn’t come until her 12 month shots. You will not ever meet an autistic individual who never had vaccines and who’s parents and grandparents never had vaccines. Unfortunately heavy metal and other toxins to pass on from both parents to the fetus so they harm the baby. That is why some kids are “born with autism”. They did not have it from conception. the toxins damaged them throughout the 9 months they were in the womb. This also explains why some kids aren’t vaccinated and still get autism. The toxins damage their stomachs, leading to brain problems since the gut and brain are connected.
MissyAvey	ConcernedMom1 MissyAvey I wouldn’t doubt it. Almost everything has GMO and chemicals in it nowadays.
ConcernedMom1	MissyAvey It could be GMO foods that are turning our children into what they are. Just a thought.
MissyAvey	rachie79 Yes. We need to focus on helping those with Autism thrive!
rachie79	I look at it as we can not change autism once diagnosed there is no cure all that we can do is accept love and support people living with Autism and research ways we can teach them to help them thrive in life and achieve there potential.I personally would not be looking for the answer of what causes Autism as no one knows and probably never will
MissyAvey	It doesn’t explain the unvaccinated children who have Autism.
unam	All I know is very typical grandson was on 3 bouts of antibiotics for ear infection then on well check day given 7 immunization s to catch him up and 2 weeks was silent and stemming in him own little world. He now lives we us.
Walkingforadam	For anyone interested, when I was trying to work out what I thought about this issue, I wrote two blog posts which you can find here: http://www.walkingforadam.blogspot.co.uk/2012/04/why-i-am-choosing-to-vaccinate-adam.html and here: http://www.walkingforadam.blogspot.co.uk/2012/04/what-i-have-learned-about-mmr.html
HeatherSaggers	Both my sons have autism, one is ‘worse’ than the other. I say worse, but he is more obvious than my other son. My husband is autistic and i am pretty sure his dad is also autistic. For me that says it is in the genes somewhere. But one thing i will always say is, that i would rather give my child a vaccination than let them catch a preventable disease and potentially die from it. The thing about online access is if you believe something then the online world will give you the answers your looking for. For me i recently was in pain, i looked on the internet and everything i pulled up told me i had cancer. It made me worry, the symptoms fit. Yet it ended up being a pulled muscle. If you want to find that vaccines cause autism that’s what you will find online. But you only see what you have decided. I firmly believe vaccines do not CAUSE autism
kb7rky	Well, of course they do! I mean, really…what do health care professionals with their CENTURIES of experience in things like this really know? I mean, after all, we all know that uneducated, vapid, moronic celebrities know far more about dangerous and deadly diseases than your doctor ever will! And, we all know, too, that just Googling your symptoms will lead to a 100% diagnosis every time! …damn it was hard typing that with a straight face… Too bad most of the idiots here on this board don’t bother to do real research into vaccines, but instead rely on public opinion and their own ignorance to facts to decide they’re right, and everyone else is wrong…right, Hend 200? Yeah, I’m talking to you, you ignorant jackass…simply because most, if not all, of your idiotic comments can be easily destroyed. Never have I seen such a case of cognitive dissonance as yours. Wow. How you manage to get yourself out of bed every morning should be making headlines over on Faux Noise.
kb7rky	Hend200 You’re outclassed and outnumbered, troll. Begone with thee.
EliCabelly	Hend200 I’m not afraid of non vaccinate children. Why would you make such an idiotic assumption? Again, you need to learn the difference between actual science and quackery.
EliCabelly	Hend200 I see you haven’t learned how to determine the difference between actual science and quackery. Maybe you should learn how to do that with your next 5 months in bed. Good luck with that though. It took me years to figure that out.

13 Comments Posted on January 15, 2014June 14, 2017 Autism, Patient Talk

Autism and Special interests! Do you or a loved one have a special interest often associated with autism?

Updated 12th March 2017

Autism & Asperger’s: What’s The Difference? Do you agree?

ssions?”.

Now that got us but it is an interesting question! If you want to use the comments box below to share any suggestions I’d be very interested to hear them. He has developed an interest in evolution and virology since then which, I suppose, is progress. (i’m sure you can see a pattern).

Anyhow the point of this blog post is to find out how many of you or your loved ones have special interests often associated with the autistic spectrum. I’d love it if you could do a couple of things.

Firstly vote in the poll below.

Secondly to tell us a bit more about the special interest in the comments box beneath.

Many thanks in advance.

Angel11	My son is 3.5 and is currently being assessed for ASD. He is obsessed with animals, and he has been since a young age. He studies their behaviour, and acts them out.
SamanthaAird	My son is 14 and on the high functioning end of the autism spectrum with Asperger’s syndrome. His obsessions are video games, youtube videos that relate to video games in some form or another, Science (Space, the human body), and his biggest one is dragons. He’s totally obsessed with dragons more than anything. So much so that he wants to be a dragon. He’s done research to find ways that he could actually make this happen. Is it bad that I look forward to the day when he realizes he can’t actually become a dragon and he moves on to a new obsession? He’s just been ridiculed by people at school (both staff and students) and some relatives who should know better because they’re grown adults (whom I know no longer speak to because of this).
MariaRobertson	My son was diagnosed with ASD (What its referred to in uk) last year not long after he turned 8. But over the years has had particular interests where getting him to participate in a conversation regarding other subjects is very difficult. When he was 2 (and this seems average for a 2 yr old) he was totally into Thomas the tank engine, but he was really into Thomas talking about it and only really watching Thomas he learnt all the character names and could tell me what happened in each book after having it only read to him once. When he was 5 it was trains, he picked up on all the London underground train lines and stations he would watch you tube videos of trains do thier run and that extended to main train lines to and he’d look at trainline maps all the time too and talk about them all the time. When he was 7 it was Angry birds and his teacher he never put forward information about t he subject at hand jsut about Angry birds. He’s now totally into Mario particularly Mario Kart wii he watches youtube videos of others playing it and will only play that one computer game its all he talks about to. On treat day he wont accept something not Mario related very well.
MarieTaylor	My son loves space, planets discovery and such since 2. He also has the same passion for drawing since 2. He has developed into an amazing artist. Finally got him into painting, took a little but now he’s going with it and even paints amazing. Art and space science for him go hand in hand.
BenjaminVarney	My wife
ShayanaTanirau	Mine were and are anime,music,art and weapons
KimMelvinShaffer	My son’s is music and game shows.
gmed	Lego and Ben 10.
Gma Janet	The ship Titanic and its sinking
meegscameron	my 4 year old is obsessed with zombies and ancient egypt
AmberMacNeil	Disney and Disney vacations
MarianneHill	astro physics and card making …
mercuryblue22	Sailor Moon and Archaeology. 😉

8 Comments Posted on January 9, 2014June 23, 2017 Autism, Patient Talk

Talking about Autism! Telling your friends and family about autism. Updated

Autism Awareness Month 2015

Getting a diagnosis of Autistic either for you or a loved one can be a traumatic experience. Check out our previous blog on the subject (https://patienttalk.org/?p=284) which in fact was one of the first posts we ran on the blog.

In this blog we are interested in kick starting a discussion on how to discuss autism with family, friends and even the wider community. While we are not aware that autism is perceived in a negative fashion (see https://patienttalk.org/?p=1668) we are interested in the best ways of getting a positive reaction to an autism diagnosis. The aim is to make the comments box below a great resource for anyone who has themselves just been diagnosed with autism or has a family member or friend who has just received a diagnosis.

As I mentioned before I found my son’s initial diagnosis very hard and, at the time, did not want to discuss it with anyone in any depth. I now feel that this was a mistake as along the way we did lose contact with people due, in part, to us not explaining the changes in our lives caused by our son’s autism. (To be honest most people assume that a five year old who can’t use a potty must be on the receiving end of bad parenting.)

One thing I have noticed is that a lot of people assume that people on the spectrum are savants rather like the Dustin Hoffman’s character in Rain Man. Not easy to disabuse people of this one I’m sorry to say.

But the real headache, for me, is the meltdowns. As the years go on they become fewer and fewer, for us at least, but when they do appear they are still an emotional tsunami. For the onlooker it seems these are just “tantrums” over nothing rather than an upturned world which our son cannot control or rectify. But the whole experience is made much worse by the looks of contempt and disgust on the faces of passers-by when it happens in public.

So how do you talk to people about it and try to get them to understand?

I know some people walk away from massive social lives finding it easier to just focus on their loved ones. Others turn to autism advocacy often with great success.

So over to you. How do you communicate autism awareness and the specific issues which affect your life to those around you and in the wider neurotypical community? It would be great if you could use the comments boxes below to share your thoughts on these matters.

You might wish to consider the following questions when framing your answers:-

a) What are the major issues with regard to autism which you feel you need to explain to others?

b) How has the autism diagnosis affected your relations with friends and family?

c) How do you explain autism to others?

d) Are they any resources you think may be of use to others in helping them raising autism awareness? This might include your own autism awareness resource.

e) How do you explain meltdowns to those around you?

Please note that these are only a few of the questions the subject raises. Please do add anything you think may be of interest.

Many thanks in advance.

LynetteConstable	JolandaKruithof Looks like it has some great information. Can you translate it to English? I can’t read Dutch. I’m sorry. But I need help explaining my son’s behaviour to his grandfather – who just thinks he is a “miserable sod”
DarvinMcCloud	Do we have any data concerning autism and hydrobaric treatment? Shouldn’t we give it a good test, if not why?
JolandaKruithof	I am a dutch mom of a 9 year old Aspie. He’s got diagnosed december ’13. Because I want my friends, family and everyone else to know what it does to us and the impact it has on our lives, I decided to go blog about it. You can find my blog at: http://aylablogt.blogspot.nl/. Hope you enjoy!
misser31	My 8 year old daughter Dakotah was diagnosed with autism @ 18 months, she has been in early intervention since then. On some things she has improved on and others she needs more help, she is a strong independent little girl who is teaching us that being different is not as common as we think anymore and they are 10x smarter then us. This year has had struggles and triumphs, she now knows how to spell her whole name and is reading a lot more. We love her more than anything and am so glad she is in our family. Love you Dakotah bear!
JulieCamacho	Although my son is not recently diagnosed he has started to have meltdowns at his Pathfinder events (club for kids 10-15 yrs of age). He had one almost 3 weeks ago and had a hard time 2 weeks ago at a large event. Then hospitalized last week from school due to a large meltdown. These events have been hard on his friends in the club and Saturday he missed the club meeting. The kids had lots of questions for the directors who decided to ask me to speak to them about what was going on with my son. I told them to look up Autism online that there are different areas people are affected in. Juans biggest area of difficulty is his social skills. I told them to also look up famous people with Autism so that they can see how people can be successful with this diagnosis. One child asked if this was a disability, my response was that this gave Juan different Abilities. They liked that comment and then we went over the positive things Juan has to offer and some of the things like teasing that he struggles with and how they can help him if they notice little signs of fustration for him. They were all intent on listening and very involved with question. I am hoping that this will help understand him a little better and make a difference in him keeping more friends.
knutegems	I would suggest you keep things simple. Any parent of an autistic child is under enough stress. Simply state that due to your child’s autism you are dealing with certain behavior issues. Most of these behaviors will change or lesson with age. There are many sources of information for people who are interested. I always felt it more important to educate the children my son was going to be with and help them to understand. They only know what they are told. If they are informed correctly they will have great understanding and be very accepting.
Amanda Rich	A) The melt downs…I want one of those bubbles floating above her head to say “I am not a spoiled brat, I am over sensitive and something just pushed me over the edge of my thresholds….please don’t roll your eyes at my Momma” (B) and (C)…our friend base has changed, if they are willing to hear us out and learn they are still our friends…some decided that their kids would “learn bad habits” (ugh) from her. Mostly I miss being able to relax, I am never not aware of her voice, her body language (that warns us that she is about DONE). I try to read everything I can, always looking for support. My biggest struggle….she looks like any typical child, she isn’t typical- she is 9 and will throw herself on the ground, ears covered, tears flowing and screaming. It is so hard when nothing looks “off” outwardly….I so thankful she is as high on the spectrum as she is, but it makes a barrier to the uneducated….I see the looks, I see the eye rolls, she is obvlious to the social cues, the social intuition is not there, she has speech deficits, and her heart is as big if not bigger than the universe. She is my Angel and I just hope that education for the public continues, if the judgemental could just walk in my shoes for a day! Thanks
JoannaPapadopoulou	I am a mother of a 3 yr and 8 month old big diagnosed with autism at the age of 2 1/2. I will try to address each one of your questions in order to assist your cause. a) I usually need to explain that my son refuses to eat any type of food besides sweets, unless it is served blended in a bottle. Also I need to explained that he has not mastered using the potty just yet and also that he will not reply verbally or look at you often when you are talking to him. b) we usually avoid gatherings when they take place at restaurants or coffee shops. We prefer house gatherings and some play grounds. Also for a long time we did not feel like inviting ppl over our house like we used to. Now we are better with that. c) I try to give basic characteristics that mostly involve my son. I usually describe it as a different way of seeing things, difficulty in communication, lack of sicialzation skills, difficulty dealing with changes and so on. d) I riled mostly on th Internet and on books about autism, Various treatment approaches like ABA, also I find others parents advice and experiences helpful and more practical. e) I usually explain to ppl what triggered the meltdown, for ex that he wanted the chocolate and I didn’t give it to him, or that he is tired and he overreacts to situations. Thank for reading this. I will be happy to discuss the issue more with you.