Diagnosis = help v not labelling HFA

[Confusingsituation]

I'm having a bit of worry about this
DS has been diagnosed as having HFA but he is young and having been able to track down some experts, I have been told the outlook is good.
They sat on the fence for ages but I think they have finally come off the fence because it means help can be put in place.
The flip side is that he has now been labelled. I didn't mind this but some kindly ? relatives have put this worry into my head.
Anyone further down the road than me, can I ask you was it the right thing to do, to have the issue named? Can it ever be harmful??

[ouryve]

A telling quote, from this week, is our lovely SENCO in AR, this week, telling me that she feels that the school is letting DS1 down - because he is incredibly bright but has so many difficulties that staff are aware that they are unable to stretch him academically. They know exactly what he's capable of, and the EP has confirmed it, but how to get him there requires a whole level of expertise that they're not sure they have.

That is not low expectations.

There are similar not low expectations with DS2. Behind a huge brick wall of disability, there is something lurking that is pretty strong. So many of us have high expectations of him (seeing the Carly video brought tears to my eyes because there are so many similarities) but we've yet to find a way to help it out of him. For now, we can only, optimistically, provide the input which will facilitate the eventual output.

[ouryve]

Beemom - I know I'm not equipped to home educate either of mine full time. And I'm an ex teacher. It's being an ex teacher that probably gives me that insight, though. I'm too personally involved. One reason i grasped portage with both hands for DS2 is that he was so utterly reliant on me and couldn't learn things that he would expect mum to do. He hasn't moved on that much, in that respect. He still climbs on my lap and asks me to start up a game on his leapster when he wants that reassurance.

I educate DS1 far better by not being his primary educator. He just soaks things up when it's presented subversively. Just being a really clever mum and not his primary educator, he asks a question and we bloody run with it and it's a lot of fun. As soon as it becomes an obligation and needs to be backed up with evidence for the authorities, it would crash and burn for both of us. Our relationship is a lot better when the terms are fluid.

[anxiousmothernet]

Cansu - my fear is that an autism label exposes my child to ignorance.

Beemom - you misinterpret me. Every day I am aware that my child has difficulties. I'm saying that the autism label doesn't correctly identify what's amiss with my child, nor does it identify WHY things are difficult for him. My child does feel empathy, have ToM, isn't particularly a visual learner, loves role play and fantasy, cares little for factual accuracy, tells lies, isn't especially good with computers/maths, can learn soft skills (albeit slowly).

I'm very grateful that my child is at mainstream school, but fear that he is vulnerable to popular misconceptions about autism + he doesn't tick all the boxes + who knows how things will turn out. Perhaps as an adult he will choose a label for himself.

Starlight, Polter and Zzzz - Star you have summarised my feelings about 'Visual Learner'. Again, it is a label saying that that child's learning style is 'other' so it's his 'fault'. But when you analyse visual timetables, it's actually about the adults needing to be better teachers.

Flowwithit - I've made loads of bold statements based on my opinions and anxieties.

Sometimes labels do get changed: spastic became cerebral palsy, mongloid became downs syndrome. I beleive that the autism label has too much baggage and too much misinformation around it.

Polter - I think that a lot of what we call Autism, is actually anxiety. If we call it anxiety then it becomes incumbent on the adults to do something about that. If we call it Autism then we blame the child for being 'other'.
I believe that poor motor planning is at the root of a large portion of my child's anxiety.

[fanjoforthemammaries7850]

 "My child does feel empathy, have ToM, isn't particularly a visual learner, loves role play and fantasy, cares little for factual accuracy, tells lies, isn't especially good with computers/maths, can learn soft skills (albeit slowly). "
I say this kindly.

Maybe the reason you are so scared of the diagnosis is you don't really undrstand ASD.

Because that is mainly a list of clichéd "Rainman" style ideas.

"He isn't good ay computers or Maths".

Hmm

[ouryve]

Because he is "at the mild end of the spectrum" you feel he is better served by being a "less able normal boy"?

*I think this actually says more about your attitude to disability than any real gripe with dx. There are far worse things than can happen to you than having autism, or even having a child that has autism, or in fact CP, or DS. You seem to have very little understanding of what the term means."

This.

I have been thinking the same.

And children are exposed to ignorance for a variety of reasons. I moved around the country a lot as a child and was exposed to ignorance about my accent. I was a gifted child and proud of it (rather arrogantly so, but others were equally arrogant about their sporting prowess, which was much more socially acceptable than scoring 95% in maths exams) and exposed to a lot of ignorance about that. And a lot of labels. I was exposed to a lot of bullying ignorance by PE teachers for my inability to do gymnastics without injuring myself. For not being able to do handstands like the other girls because my wrists were too bendy to support my weight. I was labelled as lazy and unmotivated. I didn't try hard enough. Not having a proper "label" for my hypermobility really helped me there, didn't it?

Kids are exposed to ignorance if they have ginger hair. Calling it auburn or strawberry blonde doesn't change that.

I want my boys to grow up at peace with who they are and able to make the best of it. I want them to be able to work through their limitations and celebrate their strengths. I am prepared to accept that DS2 may never live independently as an adult - that is not placing limitations on him, it is being very realistic. I am also prepared to be pleasantly surprised by him. He's only 7, after all.

[anxiousmothernet]

Polter - you have removed your post. At first I thought that you were trying to belittle me and my views by labelling me autistic!

Then I wondered whether you were joshing me that I'm so aspie I can't see the problem with DS when it's staring everyone else in the face. He does seem so utterly borderline to me that I can't understand all these teachers with their sly remarks.

So the pros of having an autism label:

1. it gave us parents a kick up the backside that he wouldn't just grow out of it
   

The pros of cataloguing symptoms and giving them a label:

1. Makes it easier to search for research and strategies on the internet
   

However, some of the best strategies we use aren't autism specific. And a lot of the Autism Strategies used at school are pants IMO.

Fanjo - my egs of ToM etc did not come from Rainman, which I haven't watched. The stuff about empathy/imagination etc comes from SBC, Tony Attwood, NAS and other leading authorities on Autism. If they don't understand ASD, who does?

The original post says: "(labelling) means help can be put in place". I feel things have come to a sorry state if a struggling child can't get help without a label. If you saw a man lying in the road next to a bicycle, would you wait for a witness to come and verify that he was knocked off his bike and not faking it, before offering help?

[anxiousmothernet]

Ouryve - it is a fine balance between high expectations and acceptance. I hope your little one will find his way.

[ouryve]

I feel things have come to a sorry state if a struggling child can't get help without a label.

Short term economics, innit. Our NHS and education systems are not a bottomless pit of money.

[WilsonFrickett]

I feel things have come to a sorry state if a struggling child can't get help without a label

I really, really don't want to descend to personal remarks on this board, but WTactualF? Many struggling children can't even get help WITH a bloody label. Welcome to the sorry state. FFS I know of a child with CP in a Victorian school building who regularly falls down the stairs travelling from classroom to classroom. She is struggling to walk and gets no help. The system sucks - however, choosing to seek dx in the hope of getting the best out of the bad system does not make people bad parents.

Ditto

And a lot of the Autism Strategies used at school are pants IMO.

Yes. We know.

You sound very, very niave when you make statements like this. I am of course delighted that your child is getting fantastic, individualised help without a 'label'. I am of course disgusted that many children do not receive this type of help, with or without one. Thing is, most parents are trying to get to the first situation and they'll do that by working the system in the best way they see fit. If that means nodding along to another session on visual timetables they'll do it, in the hope that it will lead to the support that does actually make a difference.

[coff33pot]

Starlight, Polter and Zzzz - Star you have summarised my feelings about 'Visual Learner'. Again, it is a label saying that that child's learning style is 'other' so it's his 'fault'.

NO

". I feel things have come to a sorry state if a struggling child can't get help without a label. "

REALLY?

And the subject of exposing child to ignorance.

Well that is going to happen. With or without dx I am afraid. If a child is "different" others will spot it. If they are anxious others will treat it like misbehaviour and punish or kids will ridicule.

I too dont think you understand the full implications of ASD and I really dont like the fact that someone thinks or suggests it is bullying to put a child through dx process or give a label...


Of course you are entitled to feel that way about your own child, but not mine or anyone elses.

ASD is a neurological disorder. The brain is different and wired differently.

I have a child with ASD and I have a borderline child without and she copes. I also have a child that has nothing but anxiety issues and believe me its a whole different ball game to ASD. I will say though that if anxiety is left to fester and no support or not adequately recognised then that can result in major mental issues, low self esteem issues and the makings of a very difficult future...

[coff33pot]

I guess I am trying to say that neither ASD nor Anxiety is a thing to be ignored. So if a dx is needed to gain support then it is not bullying its supporting the child and the childs future.

Misunderstood with ASD causes no end of turmoil for the child. Misunderstood with anxiety can very easily become a killer.

I am not in the best of moods and no doubt crap at explaining what I am trying to say but reading between the lines of your posts has quite wound me up.

[StarlightMcKenzie]

'At first I thought that you were trying to belittle me and my views by labelling me autistic!'

This statement worries me. If I were to ask you if you had an ASD, you would perceive that as an insult?

There are posters on this board who do have an ASD dx, and some who suspect they probably should have. There are also a couple of posters who had to be asked outright after one or two unintentional misunderstandings who had never considered the possibility but subsequently think they might touch on it.

I know that my ds will become frustrated by the disabling effects of his dx, but it isn't the dx that causes it. It is the way he is. I strongly hope that he is never ashamed of himself.

[StarlightMcKenzie]

I don't think there is a fine line between high expectations and acceptance either, sorry. I like to think I do both rather well. It's my aim anyway.

[StarlightMcKenzie]

And yes it is a sorry state that children cannot get help without a label.

It is a sorrier state that many many children cannot get help WITH a label, which imho is probably the main reason in hindsight I might not have sought one.

[Kleinzeit]

?I beleive that the autism label has too much baggage and too much misinformation around it.?

Then anxiousmother, please be extra-extra-extra careful not to accidentally spread any misinformation yourself. A lot of people don?t know that speech and language is also the place to go for help with non-verbal communication, and they shouldn?t be told the exact opposite. You haven't acknowledged my earlier post about that - were you mistaken about speech and language, or have I totally misunderstood what you were saying?

And who knows, if non-verbal communication is one of your DS?s biggest problems then maybe they?d be able to help him too? They certainly helped my DS a lot. And my DS might not quite tick all the boxes either ? the clinical psychologist told us so and added ?but I like to be creative in my diagnoses?

Though for my DS Asperger?s Syndrome really is the best-fitting diagnosis, and that?s become more apparent over the years; for your DS it might turn out to be something different. I?m no expert, but like Mareeya when I read your description I also wondered about dyspraxia. Misdiagnoses are possible, and so are changed diagnoses (especially for children whose diagnoses are borderline anyway) and so are dual diagnoses. Going through a full multidisciplinary assessment might get a you a diagnosis that is more accurate and helpful for your DS and less of a tickbox/labelling exercise.

[AmberLeaf]

At first I thought that you were trying to belittle me and my views by labelling me autistic!

Good lord.

So to you autism = bad? and thats it?

[MareeeyaDoloures]

Dorothy Bishop (child language guru) has blogged a good summary of the problems of categorising children's differences. And there are national second opinion centres, at Ormond Street and (I think) also expertise in borderline complex dc at Newcastle, Nottingham, the Maudsley and Edinburgh.

[flowwithit]

I hope anxiousmotherdotnet has gone now!
Or name changed to attentionseekerdotnet
In my opinion this is meant to be a supportive board for people to get advice etc I'm not one for arguing really but I do think if you have such a strong negative opinion you should be careful who you choose to vent that to and you most certainly should not be posting on SN help forum