Autism and Parenting Part 1- Telling your child they have autism. What did you do? Read some parents stories here

How to tell your child they have autism

How to tell your child they have autism

One of the reasons for running this blog and our Facebook page AutismTalk is to help my wife and I get advice from others in the autism community.

That being said there are some issues which we have coped with by accident. One of these is the whole area of telling a child with ASD they they are, in fact, on the spectrum.

In the case of our son John there was no real plan. He was two when he went through the diagnostic process and was normally present when we were talking to his older sister about it.

Do there was not a moment when he was told by us it just sort of happened. Indeed nowadays he explains to people that he is autistic (the word he uses) in a very matter of fact way. Actually he also uses it as a way of explaining his antics. “I can’t do that because I’m autistic”. “I’m autistic so you can’t tell me off”. “Are you sure autistic people have to go to school?”. That sort of thing!

No in retrospect i wonder if we should not have told him more formally. Though I’m not convinced it would make a huge difference. People with autism seem to be much more relaxed about it (the ASD diagnosis) than some of the people around.

We looked at this area a few months ago when we ran a poll asking “At what age did you tell your child or were you told you or they had autism or ASD?”. Now we what to explore this area how to tell your child they have autism in bit more detail.

The aim of this blog is to give our readers in the autism community an opportunity to share their stories of telling their child/children that they were on the autism spectrum.

Hopefully this will give others in a similar situation some “hints” and ideas of how to do it.

Anything you want to share will be of great interest to our readers but you might like to consider some of the following questions:-

1) Have you told your child that they are on the autistic spectrum?
2) How did you tell them and at what age were they?
3) How did they react?
4) Would you do it differently if you did it again?
5) If you decided not to share with your child can you tell us why?

Please use the comment boxes below to tell us your story.

Many thanks in advance!

 

hopeandbubs My daughter is now six, she is a twin. She was officially diagnosed at age 5 but I knew she was autistic by the age of 2.  She is verbal but socially not capable as her peers.  She attends kindergarten but with constant adult supervision. Her younger brother (age 3) will likely also be diagnosed. Because they have a 6 year old sister that has had to sit on the sidelines while they have required my full attention or our daily lives ruled by what they can tolerate I felt it necessary to begin acknowledging their challenges in terms they can comprehend.  Things like: “your brother/sister get mad/upset a lot I know”, or “they don’t understand things well like you do or other kids do”, or “its hard for them sometimes because their brain doesn’t work the same way”.  Likewise as my six year old ages I discuss her challenges in terms she can comprehend such as “I know thats really hard for you” and “you have to let people know that you need help when that happens” etc.  I feel it’s necessary so that they all feel comfortable enough to discuss their feelings about it and to be able to articulate to me and to others when they require support and in what way and that there is nothing wrong or abnormal about us.
VickieFerrisDeVries TinaCooper I would recommend the book, “Aspergers, What Does It Mean To Me?” or “Autism, What Does It Mean To Me?” These are workbooks that help the child/person understand why they do the things they do. How having an ASD affects them. They are available on Amazon.
VickieFerrisDeVries Our son is 24 with moderate to severe autism, as well as having an intellectual disability. When he started noticing that he was different from other people is when we told him. He would make comments, such as, “Am I an idiot?” “Am I weird?” etc… This has been years ago that we told him. He doesn’t quite know what having autism means, so we talk about how the autism effects him… sensitive hearing, his thoughts getting “stuck” on things, etc… I do think kids should be told, (they are more aware than we realize!)  but in a natural way where it’s just part of the conversation.
TamaraHowarth Like you, my son was diagnosed young (3) and was there throughout the processes/discussions.  We have a book to help his little sister understand and he’s obviously seen/heard/read that too.  About 6m ago (aged 8) he asked me out of the blue ‘What is Autistic?’.  I explained that we’re all different and some people’s brains work differently to others , that there’s no right or wrong, good or bad, just different.  He asked if he had autism and I simply said yes, but that’s not a bad thing, it just means you’re a little bit different to some other people.  Then he asked if he would always have it and I explained yes and he got a little bit upset until he asked if I had it and I  told him I think we’re all a little bit autistic and that’s what makes our family so special.  Then he seemed happy, we had cuddles and he’s not mentioned it since.
TinaCooper I haven’t told my son. He is 9 and was diagnosed last year. I have reservations about telling him. I don’t want him to use it as an excuse. But I feel guilty about keeping this information about him from him. I would love to hear how other parents have told their child

 
patienttalk PatriciaRobinson How old is your son out of interest?
PatriciaRobinson No, I haven’t directly told my son I treat him like he is a normal kid but with extra patience………

Do you have a child on the autism spectrum? Texas Christian University would like your help with a survey!


Texas Christian University have ask us to help then find mothers of children with autism (ASD) to participate in a survey.

They share “I am part of the Families, Autism, and Child Emotion Studies Lab at Texas Christian University. We are starting an exciting new research project here at TCU, in which we study the social and emotional functioning of parents raising a child with an autism spectrum disorder. As I’m sure you understand, the success of our research depends, in part, on our ability to recruit a large number of families who are willing to share their time with us. We would greatly appreciate your help in spreading the word about this study to families who may be interested or participating yourself. Any help we can get is always greatly appreciated! ”

They have produced a flyer giving more information on the study which we reproduce below.

Families, Autism, and Child Emotion Studies Lab

Families, Autism, and Child Emotion Studies Lab

If you wish to take part please contact Dr Naomi Ekas at tcufaces@gmail.com.

Otherwise it would be great if you could share this flyer.


Autism Awareness – What autism awareness products are you involved with? Why not share them here?


Wellie Boots for Autism Awareness

Wellie Boots for Autism Awareness

I should explain a bit of background before I start the blog properly.

We run a page on Facebook called AutismTalk which is a general space for discussion ASD related issues as well as raising autism awareness within the wider community.

We are often asked to post information on various different things people make to help raise autism awareness. And, of course, we are very happy to do this.

The kinds of things really vary. Today we had tie dyed tee shirts. (they were very cool) to earrings and what in England are called Welly Boots. After the Duke of Wellington dontcha know.

Update

I’ve just been told that in the rest of the world they are called rain boots!

Anyhow it occurs to me that lots of people are making lots of different things to help raise awareness of autism and similar conditions. Indeed a lot of the stuff folks craft for autism awareness is brilliant!

So the purpose of this blog post is very straight forward. This idea is people who do make stuff to share a bit more information and any links and pictures in the comments section below.

This will give our readers a few ideas as to what is available and where they can purchase them. At the same time it means that we can post other stuff on our FaceBook page.

So what are you waiting for. Get posting. get buying. Get raising autism awareness.

Thanks.


Autism and Anxiety : “An Investigation of Anxiety in Children and Adolescents with Autism Spectrum Disorder” – The results of recent research from The Irish Centre for Autism and Neurodevelopmental Research h


Irish Centre for Autism and Neurodevelopmental Research

Irish Centre for Autism and Neurodevelopmental Research

You may remember that a few months ago (May 2014) we invited you to take part in a survey about autism and anxiety from The Irish Centre for Autism and Neurodevelopmental Research.

Today we are delighted to present the top line findings.

If you have any comments or questions please feel free to use the comment boxes at the bottom of this blog.

This study looked at the prevalence of symptoms.

• 10% of participants were found to have borderline clinical anxiety levels, while 75% of participants obtained scores which placed them in the clinical range for anxiety. This finding is particularly interesting as a diagnosis of an anxiety disorder was reported for only 25% of the sample.
• Gastrointestinal (GI) symptoms (i.e. nausea, bloating, diarrhoea, constipation, abdominal pain) were experienced by 80% of the sample within the last three months.
• Sleep problems were reported by 92% of the sample.
• At least one form of challenging behaviour (self-injurious behaviour, aggressive/destructive behaviour, stereotypic behaviour) was reported for 90% of the sample.


This study investigated the relationships between anxiety and other symptoms.

• Anxiety was found to be related to overall GI symptoms, indicating that higher levels of anxiety are associated with higher levels of GI issues. Specifically, nausea and constipation were found to be correlated with anxiety in this sample.
• Anxiety was found to be related to sleep problems, indicating that higher levels of anxiety are associated with higher levels of sleep problems in children and adolescents with ASD. Specifically, sleep onset delay, sleep duration, sleep anxiety, parasomnias, and daytime sleepiness were found to be correlated with anxiety levels in this sample.
• This study did not find an association between anxiety and challenging behaviour.

This study was also interested in looking at the factors which predicted anxiety.

• Sleep problems were found to positively predict anxiety in the current study. This means that high levels of sleep problems predict that an individual will also experience high levels of anxiety.
• Age was found to be a significant positive predictor of anxiety. This suggests that young people with ASD experience an increase in anxiety levels as they grow older.

Improving eye contact in children diagnosed with autism – A guest post from Dr. Sonya Doherty

Dr. Sonya Doherty

Dr. Sonya Doherty

Welcome to our latest guest post from Dr. Sonya Doherty. You can read the original post on her blog here. Dr. Sonya Doherty is a licensed and board certified Naturopathic Doctor who is an active member of the CAND. Sonya Doherty completed her undergraduate training at the University of Western Ontario in a Bachelor of Science Honors Kinesiology program.

You may be interested in the results of some recent research we ran into autism and eye contact!

She writes:-
Does your child look out of the sides of their eyes?
Does your child watch their fingers while they move them in front of their eyes or tract them along surfaces?
Does your child like to watch wheels spinning?
Does your child look away from people instead of seeking eye contact?

Eye contact is a treatable and reversible symptom of autism spectrum disorder.

Impairment in visual integration has been implicated in autism spectrum disorder.  Recently I watched an incredible TED TALK called How Brains Learn to Seeby Dr. Pawan Sinha. Dr. Sinha’s research is showing that the ability to perceive information relies on motion.  Dynamic information processing may be what the brain relies on to learn to see. Motion allows that brain to process information.  The visual information, when processed properly, is then integrated or grouped together so the brain can make sense of the data.  This information is then acted on by organizing the motor steps required to take action.  To talk and to move; including making eye contact.  The eyes are the finest of the fine motor skills.  Visual motor planning relies on processing information.  If a child wants to look at you, they need the visual processing centers in the brain working so they can integrate the information and then act on it.

So, you more than likely opened this blog because someone you love is having trouble making eye contact. If it is your child, very few people can understand the despair that you feel when your child doesn’t look at you when you come home from work or when you call their name. There are very effective and safe treatments to improve eye contact. I know this because I have seen astonishing improvements in eye contact and visual processing in the thousands of children we support with biomedical treatments.  Let’s explore some of these treatments and how they work.

According to Dr. Meg Megson, autism may be a disorder linked to disruption of G proteins that control cellular signalling.  These G proteins are important for normal retinoid receptor function which allows for healthy visual processing.  So, what damages G proteins?  There is a potential role of vaccinations in G protein defects. 

Vitamin A may reconnect the retinoid receptors critical for vision, sensory perception, language processing and attention.  I also believe that social development is heavily dependent on visual processing.  Our children learn by seeing our reactions.  Picking up social cues visually is very important to optimize social development. What if your child who has trouble making eye contact and avoids peers is having trouble processing visual data?  What if, they are a social being, forced to isolate themselves because their world is blurry.  When a child’s world becomes blurry, as in regressive autism, there will undoubtedly be behavioural issues that arise. Autism is a very complex disorder. The visual processing defects have massive implications on quality of life.  Repairing visual integration, not only helps your child feel better, it opens doors to language, social and cognitive development.  Eye contact is a treatable and reversible symptom of autism spectrum disorder.  The first step is using a specific form of vitamin A to repair G proteins and begin the healing needed to re-establish healthy visual processing.

Dr. Sonya Doherty, ND FMAPS(candidate)

Natural Care Clinic