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


Autism – How should the autism community defend itself from attack and misrepresentation?


Positive people

Positive people

A few days ago the UK’s Daily Mail published an article called “Recipe for a serial killer? Childhood abuse, autism and head injuries are more common in murderers, study claims”.

The autism advocate Anna Kennedy OBE has published a brilliant riposte to the article here on her site written by Jo Worgan. You can follow her on Twitter at https://twitter.com/mummyworgan. You can read her blog here.

But attacks on the autism community seems to be on the rise. Both in terms of what is being said about people with autism by “experts” but also be organised groups online.

Indeed this site was the victim of DDoS attack on World Autism Day which meant it was down for over six hours. A month of so our Facebook page AutismTalk was targeted by a group people who hated those on the autistic spectrum and pretty much destroyed.

I’ll be honest I have no idea what to do about this. So I’m asking my readers. How should the ASD community defend itself from attack and misrepresentation?

Please use the comments box here to share your thoughts. The podium is yours!

A few older comments are below!

JasonLBDanison Needs to be legit legal help that can express empathy in a cause that is constantly warped over being so esoteric.
emma280169 ErikAllenSmith We shouldn’t have to jump through hoops in order to be considered worthy of respect though.
ErikAllenSmith Or we could attack the credibility of our detractors.
ErikAllenSmith One thing we could do is to try to balance the scales by introducing people to exceptional spectrumites, ones that have done good for mankind.
Applecrap13 It seems defeatist, but possibly the best way forward is to ignore, they get bored and go elsewhere. If you pick a fight with such vindictive ignorant people they retaliate. ASD family members means most of us don’t have time to argue the toss with trolls.

Autism Life Hacks – Getting to sleep and staying asleep.

Autism and sleeping

Autism and sleeping

Actually this is also an issue shared by most parents/caregivers of children when they are first born.  One can tell parents of new born babies  as they walk down the road by the zombie-like expression on their faces and occasional habit of going to sleep mid-conversation.

Problem is that for parents of children with autism this can go on for a long, long time after other children are snuggled up in bed.

In AutismTalk (https://www.facebook.com/AutismTalk), our Facebook discussion page, people often write in asking questions about how best to get their children with autism a  good night‘s sleep.

Now, I should mention that our son John has over the years developed reasonably regular sleeping habits. Although he is a nightmare when jetlagged.  But then so am I……………..

These days he sleeps from around 10 o’clock in the evening to around 7 o’clock the next morning.  So we know we are doing pretty well considering.  That being said he likes to have a snack before going to sleep (in his case either an apple or a pear) and needs to be cuddled as he drops off.  Oh, and he will often re-appear in the middle of the night to check we are okay.

I can generally tell when this has happened by the kick which emanates from the middle of the bed where he has placed himself.  He has a bath generally after his supper a few hours earlier.

But I know that even though he goes to sleep much later than we would like we are much better off than many parents.  Indeed I’ve heard of some children and adults who hardly sleep. Sometimes just a few minutes at a time.

The aim of this blog post is to give you an opportunity to share your autism and sleeping story.  In particular what methods you have employed to improve the situation.  You might like to consider some of the following questions when giving your comments and sharing your experience:-

1) Can you describe your or your loved one’s sleep patterns and how they have developed/changed over the years?  For better or worse?

2) If you or your child has poor sleeping patterns what effect does this have on the people around your?

3) What techniques have you used to develope a more “normal” sleeping pattern?

4) How successful have they been?

Please feel free to share anything with our readers you think will be of value in the comments section below.

Finally, is it possible for it NOT to be a problem that somebody only sleeps for a shorter time than the eight hour norm?  I know a number of people who really only sleep for a few hours a day and do not suffer from sleep deprivation. Is this ever the case with a person with autism?

Thanks very much in advance.

 

Melatonin has been a life saver for my two boys with autism. If all else fails I give them half of a dissolving tablet and the drift off 20-30 minutes later. But if you give it every night they can develop a resistance to it and you have to keep upping it. That is why we use it as a last resort. Try a steady nightly schedule first. Hope this helps.
LauraAndruk Elizabeth Howell  A developmental pediatrician told me that autistic children do not produce enough melatonin in order to fall asleep, this is why he suggests it.
clairsims I have two one grandson with downs syndrome and autism, sleep has always been a problem, still is he is now 28yrs, My great grandson is 4yrs old just been diagnosed with autism, just read about melatonin and calms forte, going to call my granddaughter and have her check this out. Iwill also look in to it.
AimeeTrevelyan Our lb used to have to be cuddled to sleep evey night, would take hours laying in bed, and eventually he would drop off usually before midnight, but then would wake around 2 and stay awake for about 3 hours running around smiling. When he was a baby we couldn’t put him in his cot and do the whole cry to sleep thing he would just make himself sick. He was put on fenerghen and it made things worse. Then when he was diagnosed high functioning asd at the age of 3 they prescribed 3ml of melatonin nightly and now majority of the time he falls asleep by 9 and wakes at 7. So much better 🙂
Rebecca318 Elizabeth Howell Yea – I should have added we only do that during school days or on days when he cannot sleep in the next day.  While it can cause the body to stop producing on its own – he already does not produce enough to slow his brain down so the good far out weighs the possible bad.  He needs sleep and I would rather give him something his body would otherwise produce instead of a narcotic or other substance.
Elizabeth Howell There is a problem with giving your child melatonin. Our bodies naturally produce melatonin and when you feed it extra doses your body then stops producing it’s own melatonin which in turn leaves you dependent on the pill. It’s a nice temporary fix but not to give to your child on a nightly basis.
Rebecca318 Melatonin and Calms Forte has worked wonders for my 8 year old son.  The melatonin helps slow his brain down to fall asleep and the Calms Forte helps him stay asleep.  He went from waking 3-4 times a night to now 1 or 2 and sometimes sleeping all night!  Calms Forte is all natural.  I had never heard of it but his new child development specialist recommended it and said she had great results for the sleeping with her spectrum kids as well as ADHD – the Calms Forte has also helped him during the day when he gets really wound up or overwhelmed.  I give him 1/2 of one for the day.  Worth checking out!
nicolebicebey My son was diagnosed PDD/NOS at age 3. He is now 19. He never slept well after the age of 2, he was a perfect baby before that sleeping more than most. He wanted to stay up all hours and then only sleep for about 4hours at most when he did fall asleep. My husband was in the military and we were so tired I remember being so frustrated at my child for not going to sleep so I just laid in his bed with him and made him stay with me and held him tight so he could not leave the bed. He got upset and cried until he cried himself to sleep. That started to be a pattern for about a week until he started to go to sleep when I put him to bed but he never slept through the night. I finally stopped fighting it and found things for him to do during the night which were quiet. Oh we tried GF/Casein free which was good for skin problems but not much else, he was also non verbal. He is now verbal with a slight delay in speech and is “recovered” from the autism. Not really but that’s what I was told by the last person who did his testing. At age 5 when he all of the sudden decided he wanted to make anime cartoons and started drawing I found my quiet task to get him through the night and keep him occupied while we slept. I slept in his room while he drew and drew and drew. He draws wonderfully (thanks to that obsessive quality) and wants to become a special effects artist. He is not a natural artist. There are people who can just draw anything, his comes from working hard at it and he is never without his sketch book. I just took a weakness or problem-his lack of sleep- and turned it into a major strength. I don’t think his sleep pattern will ever be “normal” but he turned into an artist in a very employable field and can now support himself. That is all I ever wanted for him is to have a life where he can be productive and possibly have a family of his own and be happy. I also homeschooled so that helped with our crazy hours.
LisabethHutchison
jlrowan1973 My son, now almost 14, had a really rocky start with his sleep patterns.  I can’t remember exactly when it started, but probably around age 2.  We would put him to bed…then spend the next 3 hours taking turns putting him back into bed when he came out.  It was exhausting for all of us.  We were tired at work the next day and short with the kids, and Luke was trying to sleep in the daytime.  It didn’t matter what we did to keep him awake, he still was up at night for hours.  To be honest, the sleeping didn’t resolve until we put him on a gluten free/casein free diet.  I eliminated dairy first, which I do feel is a bigger problem for him, and the improvement was almost immediate.  Taking out gluten helped too, with the sleeping but with other behaviors as well.  Since then, Luke has not had any sleeping problems.  He goes to bed exactly on time and has an uncanny internal clock that wakes him up exactly when he needs to to get ready for school.

These days, we are more lax on the GFCF diet and give enzymes with dairy/gluten, but in the beginning, I think the strict diet was crucial for helping his sleep habits along with many other behaviors.  Dairy contributes to his stimming and general awareness of everything around him.  When we first eliminated dairy, I saw a cloud lift from his eyes almost immediately.  Gluten contributes to his emotional well-being.  If he gets a lot of gluten, even now, I notice more anxiety and a shorter temper.

I know the diet is still controversial, but that is how we solved a lot of problems.  Did it “cure” my son?  No, not by a long shot.  However, it was and still is a huge component of his success.  The diet was something I could control and I was adamant about not using medication with him and it worked out for us.

Toilet training your child with autism spectrum disorder (ASD)? An invitation to take part in a research project from in the Irish Centre for Autism and Neurodevelopmental Research (ICAN).


Irish Centre for Autism and Neurodevelopmental Research

Irish Centre for Autism and Neurodevelopmental Research

We are running a  number of invitations to our readers to participate in research which we hope will greatly benefit the wider autism community on behalf of in the Irish Centre for Autism and Neurodevelopmental Research (ICAN).  You can check out their web site here http://www.nuigalway.ie/ican/index.html.

The subject of this study is toilet training and autistic children.

Has your child experienced toilet training difficulties?  Or has toileting been successful for your child? The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway are interested in hearing about your experiences with toileting a child or adolescent aged 5 to 17 years with autism.  We are interested in how being successfully toilet trained or not being toilet trained affects a child’s sleep, gastrointestinal symptoms, adaptive behaviour and quality of life. Even if your child doesn’t have these symptoms, we can still learn a lot from your information on why some children have these symptoms and others do not.

Please click below to learn more.

https://docs.google.com/forms/d/1v1mOBFl5N9ll2dDFLftNWJPNeb-xDdeAX4gjJ-zBHms/viewform

For a detailed discussion on toilet training for children with autism please have a look at our previous blog post on the subject https://patienttalk.org/autism-and-challenging-behaviour-part-two-how-do-you-go-about-toilet-training-an-autistic-child/


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

Suzies Toilet Book

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!