Are parents of children with aspergers children fooling themselves?

[mamadadawahwah]

So often i come across parents of children with aspergers with an "attitude" about autism, that their children are autistic, but that they "aspergers" children, a "cut above"?? autism??

Lets see we have low functioning autism, autism, aspergers, high functioning autism, PDDNOS, etc etc. I have spoken to parents who seem to think their children have a better future than mine who has "autism" because their children have aspergers.

As aspergers is often as debilitating as any where else on the spectrum i dont understand this logic, except that maybe some parents are fooling themselves that their children are less "dis-abled" because they have aspergers.

at the end of it all, if this belief transpires into not getting all possible help for the child, it can be very damaging. Maybe part of the reason a lot of children dont get help until they are teenagers is due to this notion? that they dont need the help, that they are only "socially compromised"??

I'm looking at it the other way round (mine has Asperger's and OCD). God knows what the future will hold for him I don't think that's in my mind usually when I describe him to someone else as autistic or having Asperger's. I tend to use whatever seems helpful at the time autism for school, grouchy grannies, times of severe stress, and Asperger's when he's being his relaxed-but-quirky self about something.

Hmm, you've got me wondering. I think I use 'autism' when we need to trigger more help and understanding of a problem, but not the rest of the time because it seems to be claiming more sympathy than we and he warrant, and well-meaning pity makes me cringe. (Schoolteacher once said over his head, 'We all feel so sorry for you, you know' -- could you floored her!)

I don't think they're fooling themselves. AS is tricky, because realistically there is very little help via adult services (currently - hopefully that will change)for those with AS, and yet they often need help. Opportunities are missed because its not available. But with the correct help the future could be quite rosy.

I do think the needs are very very different, and I'm not sure that mixed AS/ASD support groups work all that well, because you have one half of the room talking about the suicidal stress of taking exams, and the other half talking about 10 year olds in nappies. Very different problems, so very difficult to get much support from each other.

Agree with Socci though, children can change dramatically.

Before this goes any further maybe i should clarify what i was getting at...there is a reason why kids with aspergers are often so late to be diagnosed, because they dont "show up" as being autistic" the way other kids who are described as "autistic" appear. So they languish for 10 years or so without proper help. The fuel to keep parents believing that their kids are "ok" is fired by the medical establishment, schools and community.

This is why you see very few 2 year olds being diagnosed with aspergers. Yet, early intervention is key for these kids, just like my own.

Its a travesty. This is not blaming the parents, its blaming the system that lets kids grow older and older without help because they dont display "classical" autism "signs". this is where the labels really cheese me off. When you "need" a label, you cant get one, and when you DO get one, often its so late in the game or its merely an afterthought because the children are too old to benefit from the services.

So parents out there who feel comforted perhaps that their child has aspergers as opposed to "autism" (by the way its ALL autism), i would suggest not to rest on your laurels and think that aspergers is, across the board, less "severe" than "autism".

My own son's problems seem to be the same in all areas, he doesnt have huge "spikes" he is delayed almost equally in all areas. Similarly, he is progressing equally in all areas. Just because he is autistic, i have gotten the "oh dear, poor you" response from people, yet in my opinion, he is doing fantastically. He is not "high functioning, low functioning, etc etc. he is autistic.

I got him diagnosed early and for that i am grateful. Just wanted parents to know that the lackadaisical attitude of the paediatricians towards aspergers "wait and see, etc) is not on. Your children deserve the best and its about time that these "labels" actually started carrying meaning for the child, from day one, not when they are 15 or even 30!

This is interesting. I do think of my ds (AS and ADD) as having a type of autism which he will obviously have for the rest of his life. When I have time I worry how he will be able to cope when he gets older as he is already finding things more and more confusing.

It seems to be such a struggle to access appropirate help. As long as he is not having melt downs at school they don't seem that interested. It is all about £££ IMHO. When kids with more pronounced autistic traits have problems getting into special schools etc what chance do our kids have. The main aim it seems is to fob parents off as much as possible, saying that ds will "grow out" of problems. I used to want to believe this but now I know better.

mmddww ~ I think that is a very stupid and generalised statement you have made and you should be careful what you say.

I do however feel that my dd with AS is very different to a child with low functioning autism. Her main area of need is the way she interacts but she is as able, if not more than other children in all other areas of development. I am not going to apologise for that. However she has a lot of other difficulties related to anxiety and co-morbid conditions that she has alongside it. I have never ever felt that I am superior to other parents.

You sound so bitter and it's not nice at all.

This is a support board and not somewhere where to try and put one type of sn against the other. I just don't know what you are tryi

blossomhill, dont rise to it.

i have been trying to get my dd2 dx for a few years now. she presents with some auti/as traits, has low muscle tone, strong gag reflex, etc etc. i am NOT resting on my laurels, but dd2 is content 90% of the time. i am pleased with her progress, her advanced skills in some areas, and worry for her quirkiness.

she may never get a dx, but i know her needs are totally different to personalclowns ds (autisic)who requires different therepies and help but some coping techniques are the same.

All children, regardless of SN will some support in their lives. my NT dd1 gets more one2one help that dd2, as she has some learning differculties (i belive she is may be dyslexic, discussing it next week), dd3 needs glasses, i spend more time in the opticians atm than the chemist, and for our lives that says a lot.

yes i kmnow that paeds are shite, and wont dx early, everytime i get used to my dd2 and think maybe she is NT but a little quirly, we meet another professional who starts again about ASD and i just want to scream. just waiting for nursery meerting to get hauled in about it, and then reception for it all to start again.

Yes I do agree with your 2nd message- but I think diagnosis is a problem across the spectrum (OK ds1 was dxed at 3, but he could have been dxed before 2- instead we were told to wait, and told he would catchup and told he definitely wasn't autistic). I think there's always a period of readjustement where you live in some sort of vague denial, I'm sure I did, I suppose early dx helps to get over that faster.

I do think the needs are very, very different. Unfortunately the system means that parents can end up fighting against each other which is ridiculous (I lost count of the number of times I was told I was 'lucky' that ds1 was seeing a SALT- he saw one 4 times a year- for a child who couldn't talk- he wasn't lucky at all- it was a completely inappropriate amount. Really there needs to be a whole injection of money across for services across the entire spectrum, but they do need to be different services. Therein lies the problem perhaps- bigwig says'but we have autism covered providing x, y and z' when in fact only one part of the spectrum has been provided for.

mmddww-As a parent of 2 DSs dx with AS I find your posts provocative and insulting. I really do not know what you are trying to achieve here. And imo it is certainly not so easy to diagnose a very young child with AS as it is with classic autism.
Jimjams-I know exactly what you mean about the support groups. I belong to a very good one, but the needs of some of the children I hear described there are so different to those of my own DSs.

Blossomhill etc, i didnt ask a parent, nevertheless you or any other parent on this board to "apologise" for their children. I dont know where you got that notion from. I feel from your post, there is a bit of projection going on here.

My post perhaps has touched a nerve with you i don't know.

Nothing i said was, in my opinion, "stupid", and i am not "bitter"??

There is, however, in my own community a belief that "aspergers" is actually high functioning autism, when in fact aspergers is aspergers and covers a range of the spectrum.

What i find damaging and generalised is parents who have been led to believe that their child somehow doesnt need the help "immediately", because its "aspergers", not autism.

Again, aspergers can be debilitating to a person, not all persons, but many.

yes, i agree that support groups tend to be divided via the "label". When in fact, we are fighting for the same things, services and societal understanding.

Getting caught up in the "labels" when in fact they mean so many different things to any two given children is not helpful and can be extremely damaging.

I reread my post to see if it was insulting. Didnt find anything, except for this one when i suggest that you are projecting your own anger and bitterness towards my post??

mmddww-You misunderstand. Support groups are not divided because of the "label". They are divided beacuse of the range of needs within the label of autism, which covers AS as well as classic autism. And I do find being accused of "resting on our laurels"-whatever that may mean-insulting.

Mamadadawahway, this is supposed to be a support forum. I really don't think it helps trying to start arguments between parents with SN kids.

Lets face it life is hard enough when you are struggling with challenging behavious etc. I find it really helpful to chat to other parents on this board, especially ones who have kids with AS. I do agree with you that it is very difficult to access appropriate help and often people try to "fob you off" with meaningless platitudes like "he will grow out of it". I have only every come accross this attitude from parents without SN kids however.

Socci, I agree with what you say!

Well, I've not come across any parents of aspergers children who give me the impression that they think their children are a cut above mine.

In fact, rather the opposite - at least my two ASD children were good enough to show me their autistic side early doors - and in the case of DS3 he is really getting proper help already. I think that it is harder for parents of Aspergers children in some ways because their children can be rising five and in school before it really becomes apparent that there are problems.

As i said in my post

"So parents out there who feel comforted perhaps that their child has aspergers as opposed to "autism" (by the way its ALL autism), i would suggest not to rest on your laurels and think that aspergers is, across the board, less "severe" than "autism". "

I dont think this is starting an argument, i didnt start an argument, i made my opinion known via comments/statements and observations I have made with real people who i know.

There is a generalised "belief", a tendency out "there" to think that aspergers is not as "bad", "disabling" or "severe" as autism. This belief, whether or not it is mirrored in real life or not, may very well equate into services not being sought, or provided. If parents are told that your child can "live" with aspergers, have a happy/"normal" life, this doesnt sound as bad as being told "your child has a lifelong debilitating condition called "autism", "and by the way do you want ritalin or prozac".

what i get from people i speak to, also in the media, in the literature is autism (is low functioning) vs aspergers (is high functioning)How many times do you hear that Bill Gates has aspergers, Einstein had ASD, etc etc.

This is not the norm is it? WE have to look at what the labels mean for each child, and what the labels really mean in and of themselves, eg high function/low function in terms of having quality of life on a par with "peers" who are not autistic.

By the time a child with aspergers reaches the age of 7 and is still not diagnosed, my boy will have had 5 years of intervention by then, including biomed, ABA/SLT/OT/Physio, music therapy and a full time one to one aide in school.

If a child with aspergers was taken seriously at the age of 2, just think of the amazing progress they could potentially make if accorded those services equally. Further, my "learning curve" from when my boy was 2 (who is now almost 4) has skyrocketed because I know what he needs, read all the literature and researched my tail off. I was keenly aware of the "urgency" of early intervention. For a parent who has a 2 year old child who is developing aspergers, are parents instilled with the same sense of "urgency" by the doctors/schools? Are their real and valid fears poo pooed by these people? In general they are often told by the doctors, etc that their worries are unfounded, the child may "grow out of it", the child is precocious, etc etc.

If aspergers as taken as seriously as "autism", if there was even a whiff of aspergers in a 2 yr old child, every possible means of intervention should be accorded to that child. Part of it is due to the diagnostic process, but most of it is due to money.

What it comes down to, is "if its aspergers, or autism, it will show itself eventually anyway, so why hurry?" Cynical? Well speak to the local chapter of your NAS and ask parents when they got their children diagnosed.

In the case of ASD, as parents, we should be given the utmost attention to our fears about our children being on the spectrum. Parents know best, and only a parent can really track a child's progress or lack thereof. ASD is ASD, and any child on the spectrum merits the full compliment of services (for what they are) from the get go. But, because aspergers is "difficult" to diagnose, etc etc, not as "severe" as autism, children fall through the net for years. Its a vicious cycle and inevitably the child suffers.

But as I and others have said it is often not apparent that a child has AS at the age of 2. The commonest age of dx for AS is 6 I believe-because a child is not displaying enough symptoms to be picked up before that, not because of an unwillingness on the part of parents or professionals to accept that there are problems.And the needs of AS children are often completely different to those of a child with classic autism. My 18 year old son with AS is studying for his A levels; my 7 year old is in the top group for all subjects at his (mainstream) school. My two eldest DSs, in their twenties are almost certainly AS too but undiagnosed. They both have degrees. To say their needs are the same as a non-verabl autistic child at the severe end of the spectrum is clearly absurd! Of course children with AS have needs, but they are completely different needs to those of children at the more severe end of the spectrum.

My post isnt about "blaming" moms or dads, or questioning their concern for their children.

Its about what is put out there and taken as "common knowledge" on a street level, about the diff between aspergers and "autism". And yes, you are right, we had to beg for a diagnosis for our boy and he only got one because his problems were so "obvious" and were tracked on the diagnosic tools as being present.

Plenty of children with "autism" who go undiagnosed for a long time, not just children with aspergers. The whole system stinks, but it really stinks for kids with aspergers i think, because of the current mindset about it from "professionals" who will do anything to save money and for whom the "wait and see" approach always applies to children that are not their own!

ah actually MMDDWW I do kind of agree with what you were saying. When ds1's problems first became apparent we were told there was nothing wrong, then we were told that any problems he had were only mild and he would catch up- in fact he's severely autistic. Becuase I was constantly being reassured by the professionals that ds1 was fine when I first came across ABA (when he was 2) I discounted it thinking - as a friiend put it at the time- it would be like taking a sledgehammer to crack a nut. had we been told aged that ds1 was autistic (and it was certainly possible to tell), that his easy going passivity was a sign that it was likely to be at the severe end of the spectrum we would have done a lot from age 2. We did do biomed, but we would have started ABA. Instead he was dxed at 3 and we got one crappy hour of portage a week (whilst STILL being told that he was HFA when he blatently wasn't).

I suspect part of the problem is that many of the people diagnosing have very little hands on experience of children with autism, so when you get someone like ds1 who is quite bright, very sociable, quite a tease but yet severely autistic they just don't recognise it. I agree though the system is crap. Someone with hands on experience of working with autiistic children would have recognised he was autistic from before the age of 2 and that he wasn't HFA.

ANywya eventually we started ABA aged 5 rather than 2. Aged 7 he's learned to imitate and now he's doing new things all the time. I do wonder where he would be now if he had been taught to imitate aged 2 (or even 4 rather than 7).

Me, angry and bitter??? Don't think so. Re-read your original posts and many that you have posted over the year or so you have been on mn and that sums you up.
My own dd has had loads and loads of help without her dx and was in a specialist unit 3 years before she finally was.

Why you are trying to start arguments on here is beyond me. You say that many parent's of children with Aspergers think they are a cut above, well I say what nonsense. I think in the sn circles I move in everyone is supportive and understanding.
I can imagine you probably get a lot of people's backs up and that's why they get the hump, like I would.

I appear to have one of each (AS and ASD- our PAed doesn't discriminate between HFA and AS, thinks they are interchangeable). So you can imagine when I saw your thread title I was aboutt to do some serious swearinga nd eprhaps it could have been worded mroes ensitively?

Kids with ASD's can move along the spectrum, and some adults who were dx'd with AS as kids can be very ahrd to spot. Fact. Also, having a higher IQ is aprt of teh diagnostics for HFA / AS whilst a chld with learning diffciculties is mroe liely to get a dx of ASD. So if your focus on the futrure is whether your kid is going to geta job / leave home- well yes, a child with AS is probably mroe likely to do that, assuming youa re looking at extremes.

BUT my AS son is far harder to care for than my ASD one; ds3 is passive and ok yes he doesn't say much or understand much but hey he's not smacking anyone either. And yet DS£ is already having services chucked at him in a way DS1 can only dream of!

TBH, there is very little in similarity between my two bar the basics.

Yes of course I wish there were more for ds1, course I do.

My ds2 was given a preliminary dx of AS about a week after his 2nd birthday. It was made official when he was 3. Ds1's dx of ASD was made when he was 3.5yrs old. I certainly don't think that ds2 is going to have an easier time of it than ds1. I worry equally about both of them.

AS is often more difficult to dx at an earlier age because the problems are harder to spot. For many parents the first tangible difficulty that they can get help for is the fact that their child isn't talking. I knew that ds1 was 'different' but it's very difficult to explain to a HV just why. When ds1 spectacularly failed his 2yr development check, the only referral he was given was to see a SALT. Nothing was said about him not even acknowledging that there was anyone in the room with him. Nothing was said about him being in a world of his own. No. The only tangible thing the HV could pick up on was that he wasn't yet talking. Part of the criteria for dx'ing AS is that a child develops language by a certain time (age 2, I think?). These children can easily slip through the net.

Ds2 was very lucky because he had a brother with SN and there were professionals working with ds1 who took my concerns about ds2 seriously enough to refer him straight to the Paed. Without the family history no-one would have thought "Ah, here's a 14mth-old boy who loves circles, spinning, and has lost a couple of words. Let's send him off to a Paed!" Real life doesn't work that way.

Blossom i am flattered that you a. remember me from 12 months back, or b. that you took the time to trawl through my old posts.

Just occurred to me but when it was just Sam (given that DS3 only had his dx Monday that would be, erm, last week then ) I rather felt inferior to other Sn aprents: kinda in a half way house. I knew that my ds had real issues (never making fiends is a significant part of childhood ruined after all- and I don't know, but maybe its worst for the child who realises it? As Sam certainly does) yet I could see that my concerns weren't like those of some others: we didnt need wheelchairs, or oxygen, or constant hospital visits. And on the other side again- we got DLA at higher rate because of the violence. So it can be very confusing to have an AS child, very much makes you feel like you don't quite fit in: exhausted by the demands thata re made on you, yet guilty for asking for mroe because you can see what others have. Does that make sense? Is it waffle?