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

eviltwin

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

Thank you :)

Can I ask you something and if you don't wish to reply then there's no problem.

It's early days for us yet obviously but I don't want the word autism to be the word most heard by my son. Do you think kids should be told they have autism? I don't like to think he is different as all kids are different to each other. Do you think telling him he has autism when older will reinforce a 'difference' in his mind or will it help explain how he finds somethings harder.

I want him to understand but not to be weighed down by a label

This is interesting and I'd love to hear Manonboards response. My eldest was diagnosed late, she was 15, so she knew she had Aspergers. I don't like putting a label on her but she says knowing why she is the way she is has really helped her accept herself and understand herself whereas before she says she just felt weird. I'm at a stage now where I don't know if I should tell my son or not. He knows he is not like other children and so far it's not been an issue but he is starting to ask questions and I'm not sure what we should say. I don't want to hide it as its part of who he is and I don't want to make him feel it's something to be embarrassed about but don't want him to feel limited by his condition either.

manonboard

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

Thank you :)

Can I ask you something and if you don't wish to reply then there's no problem.

It's early days for us yet obviously but I don't want the word autism to be the word most heard by my son. Do you think kids should be told they have autism? I don't like to think he is different as all kids are different to each other. Do you think telling him he has autism when older will reinforce a 'difference' in his mind or will it help explain how he finds somethings harder.

I want him to understand but not to be weighed down by a label

Thank you for your sharing.

Ill answer anything, I dont have any embarrassment etc about it.

Well, It would only be a hypothetical answer since i was not aware I was Asperger until about 2.5-3 years ago.
I can say that since I came to terms with it (as i had resistance to the idea, merely my own ignorance and prejudice), knowing has certainly helped.

It just "answered" feelings and differences that i could never quite describe why things seemed to be different for me. It also allowed me to explain things to myself now that happened very long time ago, like people being angry and me not being able to understand where i kept making mistakes.

Usually in the sense that I would apply logic to a situation and derive an 'incorrect' set of behaviors because of some silly 'just cause' difference in social boundaries in that particular situation. Nobody is very good at explaining why things are the way they are to someone who can't mirror them easily without reason. They never were explained to them, so they cant tell me, and just get angry when they feel scared cause they don't understand their needs.
I think if i could of said to people. "I'm autistic and have trouble understanding that boundary, can you explain it to me?" they would be MUCH more helpful.
It also would remove the feeling that I wasn't 'right'.

So hypothetically. I would suggest yes, awareness and acceptance is key.
The concerns you may have may actually just be projections of your own fears and create fear where there needs not be any. Kids seem to take everything as ok if explain and demonstrated to be ok.

You sound like you put so much effort and work in. So much understanding and care. You give off a real sense of warmth and nurturing so I expect no matter what you do or when you do it. Your child will always be given the best you can offer, and that's the best any of us can ever do.

Dev84

I personally think that if a child with Autism or any disability which falls on the spectrum can grasp it and understand they have it then they should be told.

My little fella is 6 now, non verbal, over loaded sensory and has huge melt downs. I know for that he wouldn't understand that he is any different from any other kid.

Everybody on the spectrum is different.

I found with his diet issues that I just had to remove all sugary treats,cereals juices and junk foods out of the house.

A bit of hunger will go a long way toward them eating what they need to rather than what they want to.

We also have a 9 year daughter. We haven't treated them any different since day one and that is standing to us now.

Notavirus.exe

If I had a child with Autism who didn't notice they were different than other people, I wouldn't say a word to them about having Autism. If they knew they were different and said something about it, I would tell them.

If an Autistic child is happy and believes they're like everyone else, I can't see any positive effects of telling them they have Autism. More than likely it will demotivate them.

I don't have children, so you may disagree with my opinion.

I'm parent to a child with autism, AMA

Thanks manonboard. I guess I'll just have to see how things pan out.

gmg678

I have a 4yr old boy(he is awesome). he has a twin sister.

he was always a little behind her with certain things and ahead her for others.

one thing that he was behind was his speech. we always put it down to his sister speaking for him.

we always had slight concerns about him with eye contact and responding to us. he does all that now.

He finally got to see a speech therapist yesterday. there was a few surprising things, like things he knew that we didn't know he knew.

She did raise a concern and now he needs a assessment of need(not sure what it means)

his social language- responding to people was one thing.

gross motor skills

a language difficulty.

eye contact came back up as he didn't hold it for long enough.

the fact that he likes to count is a concern(I am putting it down to the fact that he likes to count because he knows how to count to 10)

my question is for anyone- we were told that the assessment will be about 6mths away. In the mean time he will continue his speech therapy, is there anything else I should be on the lookout for and anything else I can do to help his development?(he is in playschool with his sister, plays with friends, will be starting main stream come September)

Lucuma

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

80% of asd adults don’t have jobs and I think the same number live at home with parents. This is a constant worry as the future is so scary for my child. Will he be bullied? Will he every have a friend? Will he have a partner / child? Who will look after him once we are gone? I used to think about getting sick and how it would impact my life e.g. not being able to work / travel. Now I am petrified that I get seriously ill in case I’m not here to mind him.[/FONT]

What's you & your partner's thinking on having more children? I'm from a family of 5 and child no.4 has Aspergers. So my parents had 3 children, then a child with Aspergers, then another child. So 4 of us do not have aspergers. I think this has really diluted the whole affect it had on my parents. Yes my brother is a 30 year old adult who doesn't have a job. Yes he lives at home with his parents. Yes he was bullied (a little) in school never anything serious though. No he doesn't have and won't have a friend. No he doesn't have and won't have a partner or child. But my parents got to watch the rest of us have friends, get jobs, get married, and have kids. So they don't feel any sense of loss in that regard and their lives were/are full of the usual stuff like weddings and grandkids etc. Plus there's no worries about who will look after him when they are both gone (actually I plan to take on that one myself personally as I get on the best with him out of all the siblings and even more importantly.... I have by far the most easy going partner out of us all! ).
I know it's easier said than done to have more kids as financially ye sound like ye are already stretched, and of course there's the risk of having another child with ASD which I imagine would be your biggest fear. But I wouldn't rule it out completely. My mother had a son with asd and her next son that she had after that didn't have it.

I'm parent to a child with autism, AMA

gmg678 wrote: »

I have a 4yr old boy(he is awesome). he has a twin sister.

he was always a little behind her with certain things and ahead her for others.

one thing that he was behind was his speech. we always put it down to his sister speaking for him.

we always had slight concerns about him with eye contact and responding to us. he does all that now.

He finally got to see a speech therapist yesterday. there was a few surprising things, like things he knew that we didn't know he knew.

She did raise a concern and now he needs a assessment of need(not sure what it means)

his social language- responding to people was one thing.

gross motor skills

a language difficulty.

eye contact came back up as he didn't hold it for long enough.

the fact that he likes to count is a concern(I am putting it down to the fact that he likes to count because he knows how to count to 10)

my question is for anyone- we were told that the assessment will be about 6mths away. In the mean time he will continue his speech therapy, is there anything else I should be on the lookout for and anything else I can do to help his development?(he is in playschool with his sister, plays with friends, will be starting main stream come September)

Hi Did she/ he mention asd?

I'm parent to a child with autism, AMA

Lucuma wrote: »

What's you & your partner's thinking on having more children? I'm from a family of 5 and child no.4 has Aspergers. So my parents had 3 children, then a child with Aspergers, then another child. So 4 of us do not have aspergers. I think this has really diluted the whole affect it had on my parents. Yes my brother is a 30 year old adult who doesn't have a job. Yes he lives at home with his parents. Yes he was bullied (a little) in school never anything serious though. No he doesn't have and won't have a friend. No he doesn't have and won't have a partner or child. But my parents got to watch the rest of us have friends, get jobs, get married, and have kids. So they don't feel any sense of loss in that regard and their lives were/are full of the usual stuff like weddings and grandkids etc. Plus there's no worries about who will look after him when they are both gone (actually I plan to take on that one myself personally as I get on the best with him out of all the siblings and even more importantly.... I have by far the most easy going partner out of us all! ).
I know it's easier said than done to have more kids as financially ye sound like ye are already stretched, and of course there's the risk of having another child with ASD which I imagine would be your biggest fear. But I wouldn't rule it out completely. My mother had a son with asd and her next son that she had after that didn't have it.

I wouldn't chance it but that's a personal choice. We have plenty on our hands at the moment and the risk is quite high when it comes to a second sibling getting the same diagnosis. He does have siblings who are older than him and don't live with us. The are great kids so hope they will be good to him when he is older.

gmg678

No. she said she noticed something, that something could be there. she wouldn't say ASD at present, she recommended the assessment. he has his 2nd appointment with the ST to see what help he will need.

I'm parent to a child with autism, AMA

gmg678 wrote: »

No. she said she noticed something, that something could be there. she wouldn't say ASD at present, she recommended the assessment. he has his 2nd appointment with the ST to see what help he will need.

Ok well its a long wait for the assessment of need and they cant guarantee it will happen in 6 months. After the meeting you still have to have appointments with the speech therapist etc and to get the assessment done. This could take 12-18 months in total.

I would suggest you get a speech therapist who has experience of children with asd. I'm not saying he has it but I had him assessed when younger by a speech therapist who works in the HSE (not with asd kids) and she couldn't tell me for sure.... You need to find someone who knows what they are talking about.

have you done this test?

https://www.autismspeaks.org/what-autism/diagnosis/mchat

Dev84

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

Hi Did she/ he mention asd?

Try not to worry to much. They will at first more than likely tell you he has global developmental delays. After that it's into the early intervention program. To be fair they have to do this as they can't hand out a diagnosis without intervention.

My little lad was diagnosed when he was 3.5.

He could count to ten up until about a year ago but now has regressed in that area.

Getting your child into the system is the most important thing as it's a vehicle to getting him the services he needs.

Since the diagnosis we have secured a place in an ASD class along with his own SNA and some home care respite. He also gets his bus to school everyday with his assistant.

uck51js9zml2yt

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

I know of parents who have exaggerated children's behaviours etc to get payments like dimicilary care allowance etc but I think asd is under diagnosed.

Niamh at the start mentioned 1 in 100 people. New stats from the states claim 1 in 35 boys and an eminent psychologist who works in the field said they think 1 in 20 boys lie on the spectrum. Clearly 1 in 20 boys aren't diagnosed so there are obviously boys falling through the net.

It's harder to diagnose in some girls as they present differently so they are also not getting the hell they need.

We just had discussion today in my school on extending our ASD resouces and taking in more ASD students. What you said about kids falling through the net is a real issue. They might not need full ASD teaching but can benefit from the additional supports while still in mainstream.

stevienicks

Hi, I haven't read previous posts so forgive me if I am making you repeat yourself. This isn't about a child, more so myself. I've often been told by people that I may have Asperger's. I've always shown all the signs and I've always had difficulty connecting to people as I come across as rude when my intentions are to be kind. Anyway, I'm only twenty and wish to get 'tested' at least to see if I do in fact have Asperger's. My doctor is always telling me it's because I am depressed, however, I am not. I was just wondering if you knew of any specialists? Or how to approach getting examined by the HSE. I need them to take me seriously as I am always being told that it's just shyness. Certainly isn't the case. How long does it take to get diagnosed?

I'm parent to a child with autism, AMA

stevienicks wrote: »

Hi, I haven't read previous posts so forgive me if I am making you repeat yourself. This isn't about a child, more so myself. I've often been told by people that I may have Asperger's. I've always shown all the signs and I've always had difficulty connecting to people as I come across as rude when my intentions are to be kind. Anyway, I'm only twenty and wish to get 'tested' at least to see if I do in fact have Asperger's. My doctor is always telling me it's because I am depressed, however, I am not. I was just wondering if you knew of any specialists? Or how to approach getting examined by the HSE. I need them to take me seriously as I am always being told that it's just shyness. Certainly isn't the case. How long does it take to get diagnosed?

I'm sorry I don't but would manonboard be able to help as they recently got a diagnosis. Apologies! My fella is 4 so I've no idea about adult services.

manonboard

stevienicks wrote: »

Hi, I haven't read previous posts so forgive me if I am making you repeat yourself. This isn't about a child, more so myself. I've often been told by people that I may have Asperger's. I've always shown all the signs and I've always had difficulty connecting to people as I come across as rude when my intentions are to be kind. Anyway, I'm only twenty and wish to get 'tested' at least to see if I do in fact have Asperger's. My doctor is always telling me it's because I am depressed, however, I am not. I was just wondering if you knew of any specialists? Or how to approach getting examined by the HSE. I need them to take me seriously as I am always being told that it's just shyness. Certainly isn't the case. How long does it take to get diagnosed?

Hi StevieNicks,

I didn't get an official diagnosis because I've already learned how to handle the differences and difficulties to a level that any further external support wouldn't be of much use to me. We are all different and at different stages so what works for some is not for everyone.
Whilst i was checking up on getting diagnosed officially. I got practically no help from autism Ireland, I went down the private route as I was planning to see a therapist about some other stuff anyways.
For me, given my high interest in psychology and well being. I felt comfortable figuring it out myself and just getting help for whatever i find difficult.
I would say that there is ALOT of difference in understanding/skills of local GPS. Many horror stories floating about. If you are not getting the results you want from you GP, it may just be that they are under skilled or not interested for whatever reason in your issue. Simply get a new GP. One that you know is open to helping you with this specific difficulty.
You can of course, find a therapist who is happy to diagnose you or not. Regardless of what a piece of paper says. The support is terrible for adults, especially if reasonably well functioning if that makes sense.
I think the best route to wellness for Aspies is learning to make changes to yourself and environment to cater for your particular set of needs. That can range from many things:

eg: Social boundaries may be more difficult for you to understand. Altering your friendships by being honest that you find boundaries hard to understand can allow you to simply ask alot more often, accept their responses and respect those. Don't be afraid to ask for clarity. Its a mine field to learn to thread blind.

Emotions, Various different opinions on how ASD affects this but I simply lean towards the emotions are very difficult to process and understand without a intellectual expertise of. So go get that expertise by reading and learning, and experimenting.

Environment, I see a noticeable pattern between physical discomforts and extra heightened emotional reactions to things for ASDs. Its like if something is not ok, it has a much stronger knock on affect that non ASDs can cope with better. So on these days, don't hold yourself to any standard that would suit others, simply hold yourself to self caring for yourself and doing whatever custom stuff you need to do to feel well. From missing work, to being alone, to asking for hugs, to resting, to being extra kind to yourself, or even simply just waiting to get over the latest meltdown happening.


-

Regardless, If you feel like you want and could benefit from extra support from the medical community. Ditch your current unhelpful practicition and get other opinions. If they all agree, its likely they are right.
Confusing depression and ASD is very odd though, they overlap so tightly that its a very odd response to me. Loads of aspies have issues with depression just given the extra difficulties. To say the symptoms are just depression without looking at the source is very odd. I'd get a new GP for this work.

I hope any of that helped.

Best of luck to you and whatever help you choose for yourself.

stevienicks

manonboard wrote: »

Hi StevieNicks,

I didn't get an official diagnosis because I've already learned how to handle the differences and difficulties to a level that any further external support wouldn't be of much use to me. We are all different and at different stages so what works for some is not for everyone.
Whilst i was checking up on getting diagnosed officially. I got practically no help from autism Ireland, I went down the private route as I was planning to see a therapist about some other stuff anyways.
For me, given my high interest in psychology and well being. I felt comfortable figuring it out myself and just getting help for whatever i find difficult.
I would say that there is ALOT of difference in understanding/skills of local GPS. Many horror stories floating about. If you are not getting the results you want from you GP, it may just be that they are under skilled or not interested for whatever reason in your issue. Simply get a new GP. One that you know is open to helping you with this specific difficulty.
You can of course, find a therapist who is happy to diagnose you or not. Regardless of what a piece of paper says. The support is terrible for adults, especially if reasonably well functioning if that makes sense.
I think the best route to wellness for Aspies is learning to make changes to yourself and environment to cater for your particular set of needs. That can range from many things:

eg: Social boundaries may be more difficult for you to understand. Altering your friendships by being honest that you find boundaries hard to understand can allow you to simply ask alot more often, accept their responses and respect those. Don't be afraid to ask for clarity. Its a mine field to learn to thread blind.

Emotions, Various different opinions on how ASD affects this but I simply lean towards the emotions are very difficult to process and understand without a intellectual expertise of. So go get that expertise by reading and learning, and experimenting.

Environment, I see a noticeable pattern between physical discomforts and extra heightened emotional reactions to things for ASDs. Its like if something is not ok, it has a much stronger knock on affect that non ASDs can cope with better. So on these days, don't hold yourself to any standard that would suit others, simply hold yourself to self caring for yourself and doing whatever custom stuff you need to do to feel well. From missing work, to being alone, to asking for hugs, to resting, to being extra kind to yourself, or even simply just waiting to get over the latest meltdown happening.


-

Regardless, If you feel like you want and could benefit from extra support from the medical community. Ditch your current unhelpful practicition and get other opinions. If they all agree, its likely they are right.
Confusing depression and ASD is very odd though, they overlap so tightly that its a very odd response to me. Loads of aspies have issues with depression just given the extra difficulties. To say the symptoms are just depression without looking at the source is very odd. I'd get a new GP for this work.

I hope any of that helped.

Best of luck to you and whatever help you choose for yourself.

Thanks for the replies everyone. I find it rather sad that a service to adults is another thing the HSE is lacking in.

I can assure you though that I am not depressed. Changing GPS is very difficult for me as I live in a small town with just one surgery. I don't think any of them have experience with autism or asperger's. They think that because I seem functional I am deemed as okay. My aunty doesn't understand the way I am or why I can't just go out and socialise. I keep telling her it's not that simple, I try but to no avail. I make no connections with people whatsoever, this extends to family. I also have a lot of aspie habits and behaviours that drive my family crazy, yet they seem normal to me. Well, not normal, but I don't feel as though I am doing anything wrong. Furthermore, I am a stickler for rules. I won't do anything that is deemed bad and will always follow societies rules. Sounds stupid but true. It's very frustrating when people don't understand. I also hope it doesn't stop me from getting a job, something I am struggling to get at the moment as well.

I'm parent to a child with autism, AMA

Would you make contact with Asiam.ie and they might be able to guide you? Adam Harris who set it up is on the spectrum himself and I would think they could help you get started.

Lucuma

manonboard wrote: »

The support is terrible for adults, especially if reasonably well functioning if that makes sense.

I would not agree with this based on my adult brother. He gets good support. But he has always been in the system and didn't enter it for the first time as an adult, maybe that makes a difference.
Stevienicks my brother gets the disability allowance because of his aspergers. It helps if you are unlikely to be able to hold down a job. Perhaps making a claim for this could be the first step in finding out how one gets an official diagnosis.
If you apply for the allowance, the Dept of Social welfare will tell you that you need such-and-such a paper to get the allowance and once you know the name of the paper it will no doubt be easier to find out how one gets one. Or the Dept of Social welfare might even be able to tell you where/who you can get it from. From memory my brother had to do some sort of assessment to get the disability allowance.

I'm parent to a child with autism, AMA

This is very interesting

https://www.ted.com/talks/aditi_shankardass_a_second_opinion_on_learning_disorders

Notavirus.exe

Lucuma wrote: »

From memory my brother had to do some sort of assessment to get the disability allowance.

I'm curious as to what this 'assessment' involves. One could easily pretend to have aspergers. Is your brother in Ireland? I haven't heard of that allowance before.

January

Notavirus.exe wrote: »

I'm curious as to what this 'assessment' involves. One could easily pretend to have aspergers. Is your brother in Ireland? I haven't heard of that allowance before.

You've never heard of DA? You can't pretend to have Asperger's you need all sorts of doctors reports before you can claim DA.

Lucuma

Notavirus.exe wrote: »

I'm curious as to what this 'assessment' involves. One could easily pretend to have aspergers. Is your brother in Ireland? I haven't heard of that allowance before.

Yes in Ireland. To be fair it was probably relatively easy for him as he was diagnosed as a child, and has always been in the system. So he would have had years worth of documentation to prove he has it. Having said that I'm pretty sure he had to go for a psychological assessment of some sort when he claimed it, as he put the claim in as an adult. He wasn't receiving any kind of allowance before that and my parents never received any kind of allowance for him growing up. There was no SNAs that time either the teachers in primary & secondary just had to struggle through with him (fair play to them!)

Boards.ie: Niamh

I think it's time to close this one up, thanks for all of the questions and to I'm a Parent to a Child with Autism, AMA for the very open and honest answers to questions.

We have an ASD Parenting forum here for anyone who would like to continue the discussion or who finds themselves in a similar situation with one of their children.

If you'd like to apply to do an AMA on another subject yourself, please fill in the form here. Thanks!