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Mummy_of_Peanut
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10 Oct 2012, 5:01 am

Hi Everyone,

I don't know how I should be feeling about this. Yesterday, I went to a seminar run by our local NAS. It was about managing anger. There was another 30 or so parents there. Before the meeting I got talking to a few Mums, at my table. One had a son with Aspergers and another probable, one had a son with Aspergers and another son with low functioning autism and the other two Mums had children with low functioning autism, who were non-verbal. They were all lovely ladies and I found the seminar to be quite helpful.

However, I couldn't help wondering if what we're dealing with at home is not even comparable to the other parents (except for the one with the boys with Aspergers). My daughter has been difficult since the day she was born and, from toddler years onwards, has seldom done a thing she's been asked to. Yet, we have amazing moments too and she has an awful lot going for her. At the moment, she wants to be a book illustrator and I think it's very possible that she'll be able to achieve that. I can also imagine that she might get married and have children, if she wants to. I honestly can't see her adulthood being any less fulfilling than my own. In fact, I have hopes that she'll do more with her life than I have.

The parents with the low functioning kids were very attentive, when I was speaking about my daughter. But, I kept thinking that I had to remind them that I understood that our lives were not the same. We were speaking about after school classes and I mentioned a singing class that my daughter goes to. My daughter is actually one of the best students in the class, despite the behavioural issues. I didn't mention this at all, of course, but this was in my mind, when I was telling the parents about how good the staff were with her. The other Mums seemed enthralled that we'd found this activity that had worked out well for her. However, if they met my daughter, it wouldn't take a huge stretch of the imagination to see her doing so well. The way I'm thinking just now, her issues aren't that big a deal, compared to children who can't speak and have tantrums regularly. Is it even possible that my life is anywhere near to being as stressful as those parents?

Anyway, I just thought I had to tell someone about how I was feeling.


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ASDMommyASDKid
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10 Oct 2012, 5:26 am

In life (For moms of NTs, too) there is always someone who has it better/easier than you and always someone who has it worse/harder. That is really true about everything, not just parenting. It does not invalidate your difficulties or feelings.

I (internally) compare my son to others too, though it usually to NTs because that is the bulk of the children I see. There is some purpose to it as it helps me know what services to push for and how my son is likely perceived by peers. That said, I really should do it less. My child is his own unique person, as is yours; with unique strengths and weaknesses. These strengths and weaknesses don't just magically dissolve when faced with others with different situations.

Sure it always "could be worse," but you can't let that be an obstacle to making things better for your child.

Just my opinion, anyway.



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10 Oct 2012, 6:08 am

I know exactly where you are coming from. Exactly. My life is a bed of roses compared to the lives of some I know who's kids issues are more severe. Or at least that's what I think when I listen to their struggles. My daughter's monumental meltdown last week is a regular occurrence for many kids. I really don't know how I would be able to cope, except--as a close friend of mine pointed out--I would have adapted no matter what, because that's just the way I am.

I find that when I am with NT parents, I don't fit because they don't even need to think about stuff that I have to spend considerable time on, but then when I am with many ASD parents, I don't fit either. My kids are both mainstreamed, have friends, do well in school, and have relatively few behavioral problems.

Sometimes it means I don't know where I sit.

When I'm not caught up in it, though, I can see that we--parents of kids who can function at a higher level--just have a different set of stresses and concerns. And they are not necessarily less than anyone else's. For example, I think we have to deal more with bullying than parents of kids who are more obviously impaired (I'm not saying they don't need to be concerned, but numerous studies have indicated that kids who are not obviously impaired are at highest risk). I also think we have to deal with a greater realization of differentness and the resulting pain it can cause our kids. My son wishes he could be like other kids. This is painful for him and me, this realization and feeling of being less than. I've known many people who's children have no recognition of their differentness, or if they do, appear not to be concerned by it at all. And I know I personally think sometimes I am under more pressure because I think it is possible for both of my kids to achieve independence. I feel the weight of the world on my shoulders because if they don't, I think it will be because I didn't prepare them. I have sometimes thought it would be a lot easier if I knew that independence was out of their reach. I could plan for it and be better prepared. And know that when it didn't happen, it was because it was outside of the realm of possibilities. Now I believe it is within their realm, but I do not necessarily believe it is a given. I feel like it is on me to make it happen. It's stressful.

This is one reason I am not in favor of the change in diagnostic criteria. The two things are simply not the same. Not when you look at it from this kind of lens. But that is a whole other discussion.


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Mummy_of_Peanut
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10 Oct 2012, 6:38 am

Thanks guys. The struggles are just different I think. For example, the Mum with the boys with Aspergers and I were discussing homework. Like me, she can sit for a whole evening and her boys get very little done. The Mum with the non-verbal boy, the same age as our kids, said that he didn't get homework. There was no pressure on him to be the best, to get certificates, to have friendships, etc. If he does have these things, it's a bonus. With me, I feel it's within my daughter's grasp and I want (and expect) her to have them, even though I know certain aspects are not going to be easy. She's mainstreamed and this is likely to always be the case. But, I do worry an awful lot about the prospect of bullying. She's had a few incidents already, which are a 6yr old's equivalent of bullying, and her two female friends fell out with her yesterday, over nothing. But, even parents of NT kids have worries, different, but just as real as mine.

I tend to exist in a world of parents of NT kids. I've just never been in the company of parents who have non-verbal kids before. Two of my friends have kids with high functioning autism. Their experiences are closer to mine, but unique still. We exchange stories, which can be similar and/or opposites. Even so, one child is not mainstreamed and the other is so much more obvious than my daughter. I feel as though my daughter is the highest functioning autistic child I know, IRL. She just appears to be a very active tomboy, with concentration difficulties, but I also know there's more to it than that.


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10 Oct 2012, 7:06 am

We all face different challenges. I read an article once in Autism Aspergers Digest about just this. It was about a mom with a kid on the spectrum and other spectrum moms asked her, "how autistic is he?" She was taken aback that there is a comparison of just how autistic children are. She also felt that kids who have higher functioning autism get a hard time becasue people judge them or mislable them, and they are in the frontlines of society, etc...

My son is high functioning Aspergers, and I can tell you that EVERY SINGLE DAY is a huge struggle for our family and for him. I cant say what is better or worse, all I know is what I have. He struggles every day, he has been judged by others as a brat, spoiled, or wild child. He has had teachers treat him unfair becuase they dont look at him and see autism, they see a child who is disrespecting them by not looking at them when they talk to him, by my son giving more creative answer then they have, "Excuse me, you forgot to mention...." teachers dont like to be called out by little children. My son has attended a whole class with his back turned to the teacher and kids, but still following along, and MAN did that irk the teacher. She took it out on him by giving all the kids a special at the end, and didnt give my son. She told him they were for the good listeners and next time maybe he will do better listening. My son was so confused, as he WAS listening, he was just not looking. The world is a hard place for our kids to fit in. And unfair at times too.

It is hard for our kids no matter what. I think kids like the OPs child and my son are placed sometimes unrealistic expectations because they can talk and look NT, but we HAVE to remember they have autistic brains and will struggle and have a hard time thru lfe. My son can take part in some NT programs like Karate, and swimming...but there are accomidations made, and for my son little accomplismants are HUGE!! !

I sometimes feel like the OP becasue my son stands out in a group of ASD kids as the highest functioning, and he stands out in a group of NT kids as quirky and not fitting in. I feel as if there is NO place for my son to fit in. he stands out no matter what crows he is with.


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Mummy_of_Peanut
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10 Oct 2012, 7:37 am

MMJMOM, I think we're dealing with similar issues. My own MIL thinks she's a brat. Some of the staff in the school don't seem to have a clue about what's going on with her. One of her teachers called her lazy a few times and, although that has stopped, I still get the feeling that's what she actually thinks about her. She gets into trouble for things which aren't even naughty and she sometimes doesn't respond, as she doesn't understand what would be considered 'talking back' and what would be just answering a question. And other kids speak to her disrespectfully, which I witness every morning. So, yes, life isn't a dawdle.

Just getting out of the door in the morning is a struggle. I was still reminding her at 8.25 this morning that we were going to school and we might be late if she didn't get dressed, get her teeth brushed, hair combed and outerwear on (we leave at 8.35). Just like every morning, she said, 'Why will we be late? I don't understand what you mean'. She has no concept of time passing. Then she was screaming and shouting at me, for having the nerve to comb her hair (very gently, I must add). Then, if I tell my friend what the morning was like, she says that she gets mornings like that. NO SHE DOESN'T. My friend means well, but, needless to say, I've stopped mentioning it.

Part of the problem is that she appears so articulate and capable and, in many ways, she is. Her autism is mild, compared to others, but according to some people it must be practically non-existent, because she doesn't display the signs they'd expect (no flapping, few meltdowns outside, etc). So, when she starts crawling about the floor like a dog, they look at me as if to say, 'Why's she doing that? Why can't you get her to stop doing it?'

I'm trying to find a place for my daughter to fit in. I really need to meet parents with girls who have high functioning autism, I think.


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10 Oct 2012, 7:43 am

I think that is why this particular forum has been so beneficial to me. There are others in the same boat as my family. I am so glad for all the people here. Also the adults on the spectrum who show that I am not imagining/exaggerating things for my child as they explain how they struggled and were misunderstood as children and continue to struggle as adults. It helps to give me the backbone needed to stand up for my childs needs even if they are not as prominant to others, still they are important to my child's well-being.



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10 Oct 2012, 8:08 am

I do not identify with parents with kids on the lower end of the spectrum. I have such a huge amount of compassion for them, but our challenges just aren't the same. Trust me, I would much rather have my challenges than have to deal with speech delays, etc. However, there are times when I think it is more difficult to be on the just barely over the line into AS from NT part of the spectrum. My son's whole life is the picture of the very smart, bright kid. He is also very outgoing and friendly. People have very high expectations of him. One on one, especially if the other person is an adult, he will seem very NT, just perhaps a little "nerdy". However, throw in some sensory issues, a few OCD quirks, and really try to have a casual conversation with him and cracks start to appear. Add in a school full of kids and his rude/blunt remarks and misunderstandings occur.

I had parent/teacher conferences on Monday. My son is in the 5th grade and we have gotten him to a pretty good place at school overall. She even made the comment to me "Be glad he is so bright, so at least you don't have to deal with the academics." I am thankful he is bright, but on the other hand it can also be heartbreaking to see him come home with 50s on work I know he knows because he has this OCD thing we are still working on about rushing through his work, doing all the math in his head because he doesn't want to take the time write it out and then making stupid/silly mistakes. It can really beat down a kid's confidence to always know they can and should be doing better and failing. It is like almost being great at something all the time.


We have a new family in our church. The Mom spoke one Sunday and mentioned she had a daughter with Aspergers. My son became all excited and wanted to meet this girl. The girl is younger, only 3 or 4, but my son seems to love feeling looked up to by younger kids and feeling like he is teaching them and helping them. We told my son in 2nd grade, when was diagnosed, that he has Aspergers and he has read a couple of books from kids with AS, but we have never discussed AS being considered autism because we knew he wouldn't see himself as autistic. Anyway, this girl didn't speak much. She hand flaps and just kind of wanders. My son didn't understand. He had made a couple of friends that were like him at OT and social skills years ago and they managed to even have a playdate. They would talk in the waiting room. They mostly could interact the same as they could with NT kids, the conversations were a little different, but they had them He expected her to be like this and we had to have a discussion about this being a spectrum and exactly how people have different levels of development on this spectrum. It was difficult because he doesn't feel very different from anyone else and I didn't want him start.



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10 Oct 2012, 8:31 am

twinplets wrote:
I do not identify with parents with kids on the lower end of the spectrum. I have such a huge amount of compassion for them, but our challenges just aren't the same. Trust me, I would much rather have my challenges than have to deal with speech delays, etc. However, there are times when I think it is more difficult to be on the just barely over the line into AS from NT part of the spectrum.
I think you've hit the nail on the head here. I can't identify with them at all. I felt awkward, when they were obviously trying to identify with me. I do feel compassion and respect for them. My daughter appears to be just barely over the line from NT too. However, she's a girl, diagnosed at 6yrs, which is quite unusual. So, there must be significant traits, even if it was me who was the one to spot them in the first place. Her assessment report does state that she has significant social communication difficulties. Maybe I'm losing sight of this. She really needs someone to be in her corner and that has to be me and her Daddy.


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10 Oct 2012, 8:37 am

Mummy_of_Peanut wrote:
The Mum with the non-verbal boy, the same age as our kids, said that he didn't get homework. There was no pressure on him to be the best, to get certificates, to have friendships, etc. If he does have these things, it's a bonus.


Did this mother actually tell you that it is a bonus if he got certificates, had friendships etc, or is this YOUR opinion that it is ?



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10 Oct 2012, 9:32 am

Mummy_of_Peanut wrote:
MMJMOM, I think we're dealing with similar issues. My own MIL thinks she's a brat. Some of the staff in the school don't seem to have a clue about what's going on with her. One of her teachers called her lazy a few times and, although that has stopped, I still get the feeling that's what she actually thinks about her. She gets into trouble for things which aren't even naughty and she sometimes doesn't respond, as she doesn't understand what would be considered 'talking back' and what would be just answering a question. And other kids speak to her disrespectfully, which I witness every morning. So, yes, life isn't a dawdle.

Just getting out of the door in the morning is a struggle. I was still reminding her at 8.25 this morning that we were going to school and we might be late if she didn't get dressed, get her teeth brushed, hair combed and outerwear on (we leave at 8.35). Just like every morning, she said, 'Why will we be late? I don't understand what you mean'. She has no concept of time passing. Then she was screaming and shouting at me, for having the nerve to comb her hair (very gently, I must add). Then, if I tell my friend what the morning was like, she says that she gets mornings like that. NO SHE DOESN'T. My friend means well, but, needless to say, I've stopped mentioning it.

Part of the problem is that she appears so articulate and capable and, in many ways, she is. Her autism is mild, compared to others, but according to some people it must be practically non-existent, because she doesn't display the signs they'd expect (no flapping, few meltdowns outside, etc). So, when she starts crawling about the floor like a dog, they look at me as if to say, 'Why's she doing that? Why can't you get her to stop doing it?'

I'm trying to find a place for my daughter to fit in. I really need to meet parents with girls who have high functioning autism, I think.


Your daughter sounds so similar to my youngest (age 7). The challenges are huge, despite what anyone else thinks. I do think the pressure from others, the expectations on the child, the lack of understanding on top of the demands of such a child, equal in their own way, the difficulties of a parent with a child who is low functioning. Because it's also so much harder to get people to see the issues and to access the help you need as well, so often you are struggling alone without any help. And not being believed or understood by others, or getting any sympathy for what you are going through makes the stress all that much worse. And that doesn't even touch on the problems where professionals try to find some way to put the issues down to parenting failures, because they wouldn't do that with a low-functioning child because you can't blame a parent for a child being non-verbal, but you can try to blame them for the child having tantrums/meltdowns and ODD etc.


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10 Oct 2012, 9:41 am

HisMom wrote:
Mummy_of_Peanut wrote:
The Mum with the non-verbal boy, the same age as our kids, said that he didn't get homework. There was no pressure on him to be the best, to get certificates, to have friendships, etc. If he does have these things, it's a bonus.


Did this mother actually tell you that it is a bonus if he got certificates, had friendships etc, or is this YOUR opinion that it is ?
She didn't say that. Her son is still in nappies and can do very little for himself. She doesn't think he'll ever speak, although others have told her he might. She hopes that he will. I don't think her expectations for him are anywhere close to mine, but she still wishes for his prospects to improve. From the way she was speaking, I could tell that it would be an unexpected plus if he ever did speak or looked after himself or played with other children. She seemed realistic and optimistic at the same time.

[Edit - I should also add that one of the other parents has a child who didn't speak until he was about 9 and speaks well now. She was advising the Mum to push for speech & language therapy and not to give up hope.]


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Last edited by Mummy_of_Peanut on 10 Oct 2012, 9:55 am, edited 1 time in total.

MMJMOM
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10 Oct 2012, 9:49 am

whirlingmind wrote:
Mummy_of_Peanut wrote:
MMJMOM, I think we're dealing with similar issues. My own MIL thinks she's a brat. Some of the staff in the school don't seem to have a clue about what's going on with her. One of her teachers called her lazy a few times and, although that has stopped, I still get the feeling that's what she actually thinks about her. She gets into trouble for things which aren't even naughty and she sometimes doesn't respond, as she doesn't understand what would be considered 'talking back' and what would be just answering a question. And other kids speak to her disrespectfully, which I witness every morning. So, yes, life isn't a dawdle.

Just getting out of the door in the morning is a struggle. I was still reminding her at 8.25 this morning that we were going to school and we might be late if she didn't get dressed, get her teeth brushed, hair combed and outerwear on (we leave at 8.35). Just like every morning, she said, 'Why will we be late? I don't understand what you mean'. She has no concept of time passing. Then she was screaming and shouting at me, for having the nerve to comb her hair (very gently, I must add). Then, if I tell my friend what the morning was like, she says that she gets mornings like that. NO SHE DOESN'T. My friend means well, but, needless to say, I've stopped mentioning it.

Part of the problem is that she appears so articulate and capable and, in many ways, she is. Her autism is mild, compared to others, but according to some people it must be practically non-existent, because she doesn't display the signs they'd expect (no flapping, few meltdowns outside, etc). So, when she starts crawling about the floor like a dog, they look at me as if to say, 'Why's she doing that? Why can't you get her to stop doing it?'

I'm trying to find a place for my daughter to fit in. I really need to meet parents with girls who have high functioning autism, I think.


Your daughter sounds so similar to my youngest (age 7). The challenges are huge, despite what anyone else thinks. I do think the pressure from others, the expectations on the child, the lack of understanding on top of the demands of such a child, equal in their own way, the difficulties of a parent with a child who is low functioning. Because it's also so much harder to get people to see the issues and to access the help you need as well, so often you are struggling alone without any help. And not being believed or understood by others, or getting any sympathy for what you are going through makes the stress all that much worse. And that doesn't even touch on the problems where professionals try to find some way to put the issues down to parenting failures, because they wouldn't do that with a low-functioning child because you can't blame a parent for a child being non-verbal, but you can try to blame them for the child having tantrums/meltdowns and ODD etc.


SPOT ON!! My frined has no expectation for her non verbal son to sit at the table and do his spelling words, write sentences, and complete all his homework. Her son gets to come home from school and play with his toys, walk around his room, do whatever he wants to relax. While our kids are demended to do their homework and if her son had to sit at the table to do work, you know what the struggle is the same. No attention span, sensory issues, my son hears leaves falling outisde and it distracts him. he is now crying and yelling becasue his instructions changed on his work, and you know what? It HAS to be done. He wants to do it the old way and he just doesnt get why it has to change. My other friends lower functioning son doent get any homework either. He gets to go to an afterschool rec program where they play gamesand listen to music. Not saying they have it easier, the demands are different.

I also find very little out there in the ways of support for parents of kids like ours. If I hear one more time that all boys are obsessed with video games, I am going to crack. I KNow PLENTY of boys who love them, but arent all comsumed, they dont meltdown and lose reality over it to the extent my son does. People just dont get it. they dont live it and dont get it.

When a child with classic autism is diagnosed at 3, no one blames the mother. My son;s issues at 3 were BLAMED on me. I wasnt strict enough, I was letting hiim manipulate me, he was spoiled, he was a brat. NO he had ASPERGERS!! ! it is very hard to have no support and no one understanding. Even now that he is diagnosed peole still roll their eyes, "well, if he were MY son he sure wouldnt be acting that way". The judgements are non stop. People just have NO IDEA.

I watched a show "what would you do" and a clearly autistic boy was upset cause his fries took too long, he was up pacing and not making eye contact and chanting "fries, fries," and was taking fries from customers. They were all supportie of this boy. it was EVIDENT that he had some sort of issue. Take my son and his friend to the rest. His friend yells and screams for his food, cries, etc..but he makes beautiful eye contact, no stimming, and MAN the looks and stares and shakes of the head others give. they have no idea....it is a shame that even people with kids ont he spectrum are judgemental of eachother. It is different struggles for sure, but struggles none the less.


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J- 8, diagnosed Aspergers and ADHD possible learning disability due to porcessing speed, born with a cleft lip and palate.
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M-, who would be 6 1/2, my forever angel baby
E- 1 year old!! !


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10 Oct 2012, 10:13 am

My ASD son is 3 and so far his major issues are communication (not speach). He hasn't received a formal diagnosis (the neurologist said even though he has autistic traits, it was enough for a diagnosis) so I am not sure if he will eventiually be diagnose with Aspergers of Classic Autism, though to me, it's all ASD.

That being said, my DH has 2 non verbal autistic cousins and we have a family friend who's 12 yo who says only a few words and has classic autism so I have seen classic autism in full force. Different parents have different coping skills. I understand where the OP is coping from with feeling like a fraud.

However, I would never is a million years say that HFA is as hard or even harder than other types of autism. It just isn't. There are kids with autism who can be voilent (because of some psychological differences), there are some that are not potty trained and smear their poop (for reasons sometimes unknown) and their are some like my family friend who does all this and will run away if all the doors and windows aren't tripple locked. It is not just psychologically exhausting for the parents but physically exhausting.

My son has ran away from his father once (he ended up in Costco parking lot) and me once (he ended up in the middle of the street) and that's because we let his hand go for a minute and didn't think that he would immediately bolt. He has gotten a smidgen better but I still don't trust him to stand beside me in public.

I think that all our children come with their own blessings and challenges but I whole harted know that our challenges are so much easier than some other family members. One of my husband's cousin is now being placed in a group home. He is 40 and his mother is in her 70s (they live in the UK) and it is heart breaking for her but she has to do it so that she can see him settled in case something happens to him

When I feel down, she reminds me all the time that my son has a chance to live independently. I don't care the pressure it puts on me, I am 100% dedicated to doing whatever I can do if it gives my son a shot. As I said everyone has their own challenges, and not all parents have the coping skills to deal with their children's challenges.

But, just because your child has a greater potential to achive his/her dreams, that doesn't mean that your child has it harder than someone who may never have those dreams or someone who has those dreams but may never be able to attain them.

Anyway, I will step off my soap box now.



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10 Oct 2012, 10:22 am

MMJMOM wrote:
When a child with classic autism is diagnosed at 3, no one blames the mother. My son;s issues at 3 were BLAMED on me. I wasnt strict enough, I was letting hiim manipulate me, he was spoiled, he was a brat. NO he had ASPERGERS!! ! it is very hard to have no support and no one understanding. Even now that he is diagnosed peole still roll their eyes, "well, if he were MY son he sure wouldnt be acting that way". The judgements are non stop. People just have NO IDEA.
I'm still living with the knowledge that my in-laws only saw my daughter's behaviour as an indication of my apparent poor parenting (strangely nothing to do with my husband's parenting. :roll: ) We haven't spoken in 2 years and they have no idea that my daughter has been diagnosed with Aspergers. The last time we spoke, I didn't know she might have an ASD, just that she didn't do a thing she was asked to and that I had no influence over anything she did. To them, it was a case of her being spoiled, I was letting in to her, or that she was playing my husband off against me, but I was the wrong one, of course. After a whole day of arguing and fighting with a 4yr old, sometimes you have to decide which battles are worth fighting over and I'd already started using this approach, even without knowing she had Aspergers (and this is what we were advised at the seminar yesterday, too). I was exhausted and had no support or understanding from anyone. The last thing I needed was someone telling me was that it was all my fault.

It's easier now that she has a diagnosis, but it's still an issue. Even the food issues cause judging, when we have friends round. They still don't get that she won't eat this or that due to the Aspergers and it's not simply because I allow her to eat what she likes. Funnily, at the seminar yesterday, the food issues were the same (raiding the fridge, etc), no matter how high functioning our kids were.


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Mummy_of_Peanut
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10 Oct 2012, 10:42 am

MomofThree1975 wrote:
It is not just psychologically exhausting for the parents but physically exhausting.
It can be physically exhausting for parents of kids with high functioning autism too, it just depends on the child and the challenges presented. My daughter's not as bad as she used to be, but not so long ago, taking her anywhere was very difficult. She would not take hands or walk with any sort of restraint. I was constantly on edge, thinking she might get away and run on the road. If I tried to take her hand, she'd struggle, pulling and screaming, trying to get out of my grip (and she's very strong and very fast). She still bounces, when we get out of the car, in a carpark. My friend's son is lower functioning than my daughter, but she has never had challenges like this and has never been scared for his personal safety. He also has dyspraxia and can't run very fast, i.e. she could probably catch him if he did ever try to run away.


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"We act as though comfort and luxury were the chief requirements of life, when all we need to make us really happy is something to be enthusiatic about." Charles Kingsley