Now Ye're Talking - to a parent of a child with autism

Boards.ie: Niamh

Our next guest is a parent to a 4 year old child who has autism. The current rate of autism in Ireland is 1 in 100 so most of us probably know at least one person affected by it and yet a lot of people don't know that much about it. This is your chance to ask some questions about it and learn more. I'm a parent to a child with autism, AMA will be answering questions based on their own experiences as a parent thus far.

Thanks all

Lady is a tramp

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

Redser87

Is your child already in school? Would you prefer a mainstream school or a school for children with autism? Does it bother you when people don't use child-first language?

misstearheus

What is the "Ketchup joke?!". Often hear it being said that anyone with kids with Autism will understand Ketchup! What does that mean?!

eviltwin

As the mother of two kids with autism I just want to say well done on doing the AAA. Hopefully it will clear up some of the myths about the condition and answer the questions people have but never feel comfortable asking.

Where does your child lie on the spectrum first of all? How severe are they?

How do people respond to your child's condition? Most people, sadly, are quite fearful of it in my experience, they don't know how to deal with it.

How did you find the whole pre and post diagnosis journey and what are services like in your area.

Hollister11

Do you agree with giving children with autism and adhd medication ?

I'm personally against it.

Lady is a tramp

I know that there is a wealth of information online about the signs and symptoms of autism, but with your own child, what were the first signs you noticed and when? Was it picked up by you or a medical professional?

Do you find many parents are in denial when it comes to spotting the signs in their own child? (My own son exhibits quite a few symptoms; however his dad is very much in denial about it and I'm concerned that this could delay diagnosis/treatment, I know early intervention is very important.)

Just to clarify something ... is Aspergers just a highly functioning form of autism, or something completely different?

I'm parent to a child with autism, AMA

Lady is a tramp wrote: »

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

Hi Lady is a Tramp,

Ill look forward to your questions and will answer any I can. Obviously, as my child is only 4, I wouldn't have the experience that parents of older asd kids would have.

Well you started with a doozy of a question - autism and vaccines... I suppose where I am right now is that I'm reading about it and trying to make an informed decision. My child was vaccinated so the horse has bolted in that sense and I didn't notice any change in him due to the vaccines. However, I know a number of intelligent, rational and sensible parents who saw immediate changes in their children after vaccines.

I guess where I am right now is that I don't think vaccines suit every child just like children and adults can have reactions to any medication. The number of vaccines now being to administered to young children in the USA for example scares the life out of me (see attached). So I suppose I think they should be tailored to each child rather than just pumped into the entire population.

I don't tend to ask other parents about the vaccine issue as its a very personal view.

I'm parent to a child with autism, AMA

Redser87 wrote: »

Is your child already in school? Would you prefer a mainstream school or a school for children with autism? Does it bother you when people don't use child-first language?

Nope my child has a home tutor for 20 hours per week and she also attends crèche with him for 2 morning per week. I don't intend sending him to school until September 2017. Our home tuition subsidy runs out in July 16 so we will have to fund it ourselves next year as he has been offered a place in an asd preschool unit which we wont take. I want to give him the best chance to start in a mainstream class so I think another year of one to one tuition will give him the best chance.

No it doesn't bother me.

I'm parent to a child with autism, AMA

misstearheus wrote: »

What is the "Ketchup joke?!". Often hear it being said that anyone with kids with Autism will understand Ketchup! What does that mean?!

Oh I cant give away that secret TBH I've no idea what the ketchup joke is. Does that mean I need to ketchup?

yellow hen

What age was your child diagnosed and, in hindsight, is there anything you wish you'd done earlier/differently?

I'm parent to a child with autism, AMA

eviltwin wrote: »

As the mother of two kids with autism I just want to say well done on doing the AAA. Hopefully it will clear up some of the myths about the condition and answer the questions people have but never feel comfortable asking.

Where does your child lie on the spectrum first of all? How severe are they?

How do people respond to your child's condition? Most people, sadly, are quite fearful of it in my experience, they don't know how to deal with it.

How did you find the whole pre and post diagnosis journey and what are services like in your area.

Hi eviltwin,

You might need to help me out with some responses so

Where does he lie on the spectrum.... The psychologist refused to say mild / severe etc as he was just gone 2 when he was diagnosed. He was initially privately diagnosed with PDD NOS as he didn't exhibit sensory / routine issues and then full ASD by the HSE.

He has severe speech delay but his understanding is improving all the time. His fine and gross motor skills are age appropriate and he learns quickly. He doesn't have routine issues still but he does have very sensitive ears which clearly is an issue for him in crèche due to noise levels. He's also toilet trained. To answer your question, I would consider his speech delay quite severe but everything else to be mild.

I haven't had one negative experience yet TG. He's invite to parties etc and gets lots of hugs from friends and family etc. I suppose he's still quite young and if he gets upset, mainly due to noise at events, then its not that noticeable due to his age.

I found the pre and post diagnosis journey to be absolute and total mental and emotional torture. My heart breaks when I hear of other parents having suspicions and ultimately getting a diagnosis because it was the hardest things I've had to deal with in my life. Part of the reason I wanted to do this was to encourage parents or family members who have concerns to ask questions here. Hopefully other parents like you will chime in to offer your experience where appropriate.

We are lucky where we are in that the services are very good and he gets all his support. In saying that, we are paying for speech and occupational therapy privately as even though the service is good compared to other areas in the country, its not enough.

I'm parent to a child with autism, AMA

Hollister11 wrote: »

Do you agree with giving children with autism and adhd medication ?

I'm personally against it.

I don't really agree with giving kids medication full stop but I haven't lived with a child with adhd so I cant really comment.

I do everything I can to avoid giving my child medication as his gut is in a shambles after being prescribed 15 antibiotics in 2 years by GP's. I find medicine addresses the symptom and not the cause and I'm trying to improve my child's health through diet and natural supplements rather than resorting to a prescription each time.

I have a family member who has a child with adhd and who is on medication for it. I know it wasn't an easy decision for them but it seems to have worked and their (his and theirs) quality of life has improved.

Ruu

Is there much support in Ireland with regard to materials and other resources for families with children on the spectrum?

I'm parent to a child with autism, AMA

Lady is a tramp wrote: »

I know that there is a wealth of information online about the signs and symptoms of autism, but with your own child, what were the first signs you noticed and when? Was it picked up by you or a medical professional?

Do you find many parents are in denial when it comes to spotting the signs in their own child? (My own son exhibits quite a few symptoms; however his dad is very much in denial about it and I'm concerned that this could delay diagnosis/treatment, I know early intervention is very important.)

Just to clarify something ... is Aspergers just a highly functioning form of autism, or something completely different?

Well I was pretty paranoid about it as my cousin has a son with asd. When I was pregnant I was sure I was having a girl and when I found out it was a boy my first thought was asd.....

Because of these concerns, I was very obsessed with milestones and noted down each of them missed or hit. This was of great use to me when it came to meeting the professionals. His speech wasn't coming on, he ran up and down and up and down all day, he never pointed, he had bad gastrointestinal issues (very common with ASD) and didn't sleep. I flagged with 4 GP's who told me I was wrong and then I insisted at 20 months that the public health nurse refer me to the speech therapist. They saw him at 25 months and knew straight away.

He had no play skills, couldn't copy or mimic and didn't have joint attention.

He was taken on by the early intervention team at 26 months and privately diagnosed at 27 months. His home tuition started at 28 months.

I find a lot of people in denial about the signs sadly. I've had parents approach me for a chat and I give them the info and tell them what we did and 6 /12 months later they still have done nothing.

Don't get me wrong - I don't want this for my child but I know early intervention is his only hope for a great life. His wellbeing is more important than my pride.

I cant tell you exactly what Aspbergers is but its my understanding that its high functioning as speech comes more easily but the social skills are still impaired.

I'm parent to a child with autism, AMA

Ruu wrote: »

Is there much support in Ireland with regard to materials and other resources for families with children on the spectrum?

I'm not sure what you are asking exactly?

I tend to use Pinterest and Facebook for materials such as printables etc and they are mainly from American companies. I find the occupation therapy items e.g. modified ear phones for listening therapy are extortionate compared to the prices in the USA and UK. Stuff like weighted vests etc are way dearer too. ASD is a total money racket. It's incredibly expensive.

I think my son is lucky to have been diagnosed now as there is so much stuff online for teaching kids with ASD. Is that what you meant?

I'm parent to a child with autism, AMA

yellow hen wrote: »

What age was your child diagnosed and, in hindsight, is there anything you wish you'd done earlier/differently?

He was 27 months when privately diagnosed and then 31 months when diagnosed by the HSE.

I wish I hadn't listened to people telling me he's a slow talker because he's a boy and 'that's what boys do'. I should have trusted my gut more and not paid any heed to their 'first time mother' attitude.

I guess there is nothing I wish I had done differently other than having gone to the speech therapist earlier.

Oh actually I do wish I hadn't allow him get so many antibiotics. I do think I was neglectful by just accepting prescription after prescription rather than looking at the cause.

Lady is a tramp

I'm just curious as to whether he's your only child? (The reason I ask is that I'm guessing parents of children with ASD must have a tough time coping for other children as well, with all of the work and appointments etc involved with ASD.)

Also friend of mine has a son who has just been diagnosed with ASD, he's close in age to my son and his behaviour is very similar to my son's, which is what led me to question whether my own son may have similar issue. One thing I found surprising is that his son is quite cuddly and happy and affectionate - I guess I don't know much about children on the spectrum, I had somehow gotten the impression that most children with autism are withdrawn and show little affection. Is that a common misconception, or is there some truth to it? (I hope that question isn't offensive to you in any way! I'm just trying to get a better understanding of the whole condition!)

eviltwin

I'm parent to a child with autism, AMA wrote: »

I found the pre and post diagnosis journey to be absolute and total mental and emotional torture. My heart breaks when I hear of other parents having suspicions and ultimately getting a diagnosis because it was the hardest things I've had to deal with in my life. Part of the reason I wanted to do this was to encourage parents or family members who have concerns to ask questions here. Hopefully other parents like you will chime in to offer your experience where appropriate.

Yeah, I completely get this. We had the same thing. For something so common it's shocking how little help and support there can be during the process. Everything is so much more difficult than it needs to be.

I'm parent to a child with autism, AMA

Lady is a tramp wrote: »

I'm just curious as to whether he's your only child? (The reason I ask is that I'm guessing parents of children with ASD must have a tough time coping for other children as well, with all of the work and appointments etc involved with ASD.)

Also friend of mine has a son who has just been diagnosed with ASD, he's close in age to my son and his behaviour is very similar to my son's, which is what led me to question whether my own son may have similar issue.


One thing I found surprising is that his son is quite cuddly and happy and affectionate - I guess I don't know much about children on the spectrum, I had somehow gotten the impression that most children with autism are withdrawn and show little affection. Is that a common misconception, or is there some truth to it? (I hope that question isn't offensive to you in any way! I'm just trying to get a better understanding of the whole condition!)

He is our only child but due to other circumstances. I've had to take carers leave from work to ensure he got to all his appointments. I'm happy he has so many appointments but its still stressful to deal with the constant analysis of your child not to mention the expense (and lack of income!)

All kids on the spectrum are totally different. My fella is very cuddly too - he likes the deep pressure.... The kids can be withdrawn especially if they have trouble with their communication and social integration. I found with the early intervention that he is pretty much always clued in whether or not he wants to be social

Maybe start by filling this out to see if you should take it further.

https://www.m-chat.org/index.php

TBH I think its always better to be safe than sorry and if you have any concern, get the child assessed and go with your gut oh and you aren't offending me in the slightest

celligraphy

Four words... Thomas the tank engine does your kid love it ?

I'm parent to a child with autism, AMA

eviltwin wrote: »

Yeah, I completely get this. We had the same thing. For something so common it's shocking how little help and support there can be during the process. Everything is so much more difficult than it needs to be.

Absolutely. I relied on total strangers and my own research. I found it so scary as I never knew if we were making the best choices for him.

I'm parent to a child with autism, AMA

celligraphy wrote: »

Four words... Thomas the tank engine does your kid love it ?

Lol no. He is addicted to Bubble Guppies and hates Peppa Pig (due to the snorting).

yellow hen

celligraphy wrote: »

Four words... Thomas the tank engine does your kid love it ?

Is that not a bit of a leap???

yellow hen

Thank you for your honesty here OP. We're just embarking on the assessment and it's an emotional rollercoaster. We're initially starting private OT and SPD in the hope that it's just a sensory disorder and speech delay but in my heart I don't think it is.

A_Sober_Paddy

Lady is a tramp wrote: »

Ooooh very interesting!

I'll probably have a few questions on this, but I'll kick it off with a controversial one ... as a parent, what's your view on the supposed link between autism and vaccines? Also, what's your experience with other parents of children with autism, is it an issue/concern for many of them? Or do most see it as a load of bollox!

There is absolutely no link between vaccines and autism. The person who published the paper in the 90's was found guilty of fabricating it.
https://en.m.wikipedia.org/wiki/MMR_vaccine_controversy

Lady is a tramp

A_Sober_Paddy wrote: »

There is absolutely no link between vaccines and autism. The person who published the paper in the 90's was found guilty of fabricating it.
https://en.m.wikipedia.org/wiki/MMR_vaccine_controversy

I'd be fully in agreement with you the lack of evidence of any link, but I don't think there's any point in dragging this particular thread off-topic ... maybe the Parenting or Health Sciences forum would be better for a debate on the issue, if you wanted to start a thread there? I just asked as it's a common topic amongst parents of autistic children, and I was interested in this particular mother's opinion.

It's an AMA thread, not a general debate/discussion thread.

Steven81

http://www.dailymail.co.uk/health/article-470672/How-Thomas-Tank-Engine-puts-autistic-children-right-track.html

Our 3.5 girl loves thomas, she knows all the characters too.

A_Sober_Paddy

Lady is a tramp wrote: »

I'd be fully in agreement with you the lack of evidence of any link, but I don't think there's any point in dragging this particular thread off-topic ... maybe the Parenting or Health Sciences forum would be better for a debate on the issue, if you wanted to start a thread there? I just asked as it's a common topic amongst parents of autistic children, and I was interested in this particular mother's opinion.

It's an AMA thread, not a general debate/discussion thread.

I understand, but was responding to your post

I'm parent to a child with autism, AMA

I personally wouldn't be relying on Wikipedia for information on vaccinating my child....

I find this article interesting.

http://thinkingmomsrevolution.com/the-thompson-transcripts-shocking-revelations-by-the-cdc-whistleblower/

It's not just the actual vaccine that needs to be assessed but also the timing and the fillers used (mercury etc)

As mentioned above, this isn't the place to be debating vaccinations but it's definitely something parents should research before embarking on it.

smr85

I'm parent to a child with autism, AMA wrote: »

Nope my child has a home tutor for 20 hours per week and she also attends crèche with him for 2 morning per week. I don't intend sending him to school until September 2017. Our home tuition subsidy runs out in July 16 so we will have to fund it ourselves next year as he has been offered a place in an asd preschool unit which we wont take. I want to give him the best chance to start in a mainstream class so I think another year of one to one tuition will give him the best chance.

No it doesn't bother me.

Can I ask why you are refusing the place in the ASD preschool?
Is it an early intervention unit attached to a mainstream school or is it a stand alone preschool? Have you discussed this decision with other parents or professionals who have experience of early intervention and integration?

For full disclosure I work with children with ASD so I am curious as to how and why you have made the decision.