Absolutely fuming

[JenRose]

Who told me that the asessment of M has finished, even though they have only asessed him during clinic times and have not observed him in school or at home, so thats ok i thought because we are going to see a private psych who WILL asess him at home.

Then she says that we need to make him do work from 9-12, eg worksheets and that if he doesnt do it then he doesnt get to watch tv or play out with friends.

 

Next, M has trouble with peer relationships and socialising because us as his parents give him too much attention and he doesnt know how to socialise properly as a result.

 

Next, I think it would be a good idea if you and husband went on a parenting course

 

So, i have to force him to do work, how do i do that - chain him to a chair?

 

Stop giving him attention because he doesnt know how to play properly as a result

 

And me and D are obviously cr*p parents because we need training.

 

She wants to see evidence of him doing work-what is she the education police?

 

And this is the best "you will have to accept that you will have to go back into school, it is illegal for you to be off school and your mum and dad will get into trouble if you dont go back"

 

 

So so angry, dont know what to think, D is stunned he cant say anything at the moment, she refuses to accept that M is ASD and that his problems are caused by us as his parents.

[oracle]

Hi JenRose,

 

If you ever want to speak to me pm me and I will give you my number. I think that you really need to speak to Anne Mclean again. I don't like the tone of this at all.

 

<'> Carole

[Tez]

JenRose,

 

I'm stunned. Wasn't she backing you last week at the meeting with the LEA and the EWO so that you got the home tuition? What's changed? Carole's suggestion of speaking to Anne McClean seems a good one.

[lil_me]

Never heard comments like that before, still in shock after reading that as our CP has been so supportive. Saying that I have never tried to take my son out of school, yet.

 

With regards to the parenting course, I disagree with what she has said, as I think that is extremely rude, but I have voluntarily gone on one recently and it has definately helped me. Probably because it has got me out of the house and with other parents sharing hopes, fears and ideas.

Edited March 7, 2006 by lil_me

[Flora]

Jenrose, <'>

 

God when I hear things like this it literally makes me want to weep. How dare they turn the tables on you like this.

 

I hope Carole can give you some good advice.

 

Lauren

[Bullet]

The only thing I can suggest is that you write down all the points you can think of as to why you think your Ds has an ASD. Then ask them to go through it and explain to you why they don't think he has an ASD.

I would be fuming as well.

[rainbow queen]

i have been on several parenting courses in the past and yes they helped with some stuff -but it didnt cure my son and i still believe he is on the autistic spectrum.

this must of made you feel very angry.

i keep getting passed off as well-the ot was the last one but im refusing to back down-i wrote letter of complaint and she then said shes going have meeting with her managers about it all.

im really dreading appointment mon at camhs-i hope to god that the guy will listen to me-and see what im saying i swear i cant take no more of this

 

i really hope you sort it out <'>

[JenRose]

yes, she was backing us last week at the meeting and i dont understand whats changed either.

 

I cant believe the way she was saying things to DS, he says he never wants to see her again and that she,s mean as she told him he cant watch spongebob unless he works to a school schedule.

 

We have made contact with the private psych and are going to get DS assessed fully this time, spoke to NAS again today and they said that they hear this a lot "autistic traits" but no dx, and that the private psych is really experienced and does work for social services and the government.

 

Dont want to take M back to see psych again but we are just waiting to hear if M will be statemented, they have until next week to let us know.

 

Dont care if they dont statement him as we are now thinking that we should just home ed him ourselves anyway as the school and the LEA are a bunch of losers who are not interested.

[KarenT]

Jen, this sounds so much like the situation we're in at the moment. We've been told throughout J's assessment that the team were pretty convinced he had AS - in fact we were told that the assessment was a formality. That lasted for a whole year until the CAHMS nurse came out and (eventually) told us that the department thinks he's normal and laid the blame squarely at our door. Don't intend to blow my own trumpet here but I shudder to think what J would have been like if we hadn't done all the positive things we have for him over the years, but still his difficulties are our fault.

 

I think the advice to write down your reasons for suspecting ASD is excellent and will give you a starting point. Good luck with it - so far we haven't even got an appointment to discuss the consensus of opinion on J, so we're left in limbo not knowing what they think.

 

Karen

x

[florrie]

can't offer you any advice except to say I know how you feel and it makes me really frustrated and angry at this delay that is going on in dx children and incompetent people who do not know what they are talking about, and the distress they put us parents through, and the harm it also does to the children particularly if you follow those recommendations

 

I went through it ten years before my son was dx and another 8 for myself and it is still going on. I had to take my son out of school when he had a breakdown due to bullying and inappropriate education plan, but because we blamed them, we never heard a thing, they were quite happy to just ignore the situation when it suits them

 

Really sorry to hear you are going through this

[Paula]

Its not against the law to remove youre child from school.But you have to get them taken of the school register.The law states children by law have to be educated but they dont have to be educated in school.

 

 

It just shows that there are still people in posistions of authority out there passing judgement who still stupidy beleive autism is a result of bad parenting and it isnt !!!!!!!!!!!!!! No wonder youre fumeing.

 

I think most of us parents on here at some stage have had it suggested that it is us to blame.IT ISNT>

 

Good luck with it.Dont back down stand youre ground for what you know is right.Good luck.

 

<'>

[CarerQuie]

This 'blame the parents' mentality that so many so-called professionals seem to have really annoys me.Perhaps you should suggest that THEY attend a course for how to listen to parents and treat them as human beings.xx

[florrie]

CarerQuie, what a great idea.

[JenRose]

Aw thanks guys, i am stunned actually by what was said to us yesterday, i feel a bit intimidated as if ive done something wrong, all last night i lay awake running through my mind what i could have done wrong for M as a parent, the psychiatrist last month said "this could be an attachment issue" dont know what she means by that really but dont like the sound of it.

[florrie]

I don't know if this helps at all but my nephew from the age of three i culd see aspie traits less than my son but nevertheless quite clear to me obsessional interests in thunderbirds need for routines faddy obsessive eater etc. I did mention it but it was ridiculed by family and sister who don't believe asd exists.

 

However eventually when he was 7 he ended up at psychiatrists because of behaviour she could not cope with, and he did a brain scan and told her he had autism and psychosis, Imust admit i didn't know they could tell psychosis on brain scan but that is what they told her, and I was intrigued because my dad had been dx with manic depression as a teenager. Any way the school also thought as well as health visitor at this stage thought he had aspergers, but when she wanted it in writing he refused and said it might go away and he didn't want to dx it formally in case he got sued at a later stage, so he referred her to paediatrician who said although he had some autistic traits it wasn't aspergers because he had empathy and knew what a mother and father were, but didn't do a proper and thorough assessment for asd and referred her back to psych, who then started to blame my sister for his behaviour and said it was her parenting that was the problem, she got cross and said she would go privately for assessment and when she did so she would be letting them know. I did groan when she told me she had said that because i don't think that was a good idea to say that it must make them feel threatened She asked for a second referal on nhs but that went wrong as refused to see her and said orignal dx was adequate, and ever since then she has been getting letters from psych which she just bins, and guess what now all his medical notes have gone missing. I actually don't think she will get dx on nhs now and can't actually afford one privately which is why she should have thought before she spoke

 

I'm not going to make any conclusions about this make your own mind up, but don't take it to heart if they blame you for things, mostly its people who don't get it and aren't competent to dx asd.

[lil_me]

This 'blame the parents' mentality that so many so-called professionals seem to have really annoys me.Perhaps you should suggest that THEY attend a course for how to listen to parents and treat them as human beings.xx

What a great idea, will keep that in mind incase I come accross one of these so called professionals who are rude and ignorant.

[JenRose]

Thanks for that example florrie, it gives us mothers strength who are going through difficult times.

I KNOW that DS has ASD, i have AS myself and he is so like me and even CAMHS said traits of autism but no dx, we are going to go private and i have been in touch with a specialist recommended by the NAS, he is ringing me tomorrow so i will see what he says.

thanks

[Bullet]

Why did they decide he had traits but not enough to give him the diagnosis?

[JenRose]

Dont know why they said that, it puzzles us, i said to psych "how can you have traits but not have ASD"?

She said "Its like saying that he has the gene but its not manifesting itself enough to warrant a dx" HUH?

 

Have just had a chat with my mum, she says that this is emotional blackmail on the part of the psych and that she obviousley doesnt know what to do with or how to handle M.

 

He was telling her that she was boring him and that he wouldnt do what she said, you cant make me go back to that school etc, she was getting annoyed by him and told him that we were failing in our duty as his parents if we didnt make sure that he got a good education

[Malika]

Hi Jenrose, <'>

 

Sorry a bit late may be but I really feel for you and what that psychologist has said you are right to go private even if they did not have enough confirmation they could have given a DX of PDD NOS it would have been better than saying it is your fault and that you have bad parental skills

 

I wonder if some professionals are not just trying to reduce the amount of ASD AS DX. I was lucky that the professionals were all right with me during the H assesment but instead I had to get those kind of comment from the LEA educational psychologist at least she had no power to change the DX. But that made me lose my case with the SENDIST.

 

I am glad you can get help and support situation like this can be so upsetting.

 

All the best.

 

Malika.

[jb1964]

Dont know why they said that, it puzzles us, i said to psych "how can you have traits but not have ASD"?

She said "Its like saying that he has the gene but its not manifesting itself enough to warrant a dx" HUH?

 

When my daughter was being assessed - they told me that everyone has certain 'autisitic traits' and it's how they manifest together and whether they meet the triad of impairments that determines whether a label or not should be given.

 

Don't know if that helps.

[JenRose]

thanks for the info, M has the triad of impairments though, They havent done a school visit as he isnt at school but theyve had documentation from school, the senco saying about his problems in the playground and socialising, my mum and aunty have told them about his meltdowns,routines,aggression etc, because they havent seen him be like that in the real world they just say no.

 

But the other day i asked would the assessment restart when he is back in school-if he gets back in school and they said no, he definately is not autistic, just "complex needs" with hypersensitivity and autistic traits

[jb1964]

Can't understand how they can be so adamant. How old is your son?

 

When he's had these assessments is it just an appointment visit? Is it harder to see when they are younger and if they are the passive kind (meltdowns at home) and they only see them for an appointment (1 or 2 hours)?

 

My daughter visited CAHMS once a week for a whole day and had home visits by the CPN as well, she was 12 and had been referred for a totally different thing, we didn't know about AS.

 

I remember the CPN saying that first impressions - especially at the initial appointment before attending the unit that my daughter could appear to be a role model child - very controlled, speaking correctly etc. It was only after a longer period and repeated all day visits that they could see all her problems.

 

However, she said that a very trained eye can see that the control is too much, and she told me after the initial appointment that she suspected AS. She said that even her posture, her mannerisms, the way she talked and the way she answered questions etc were all obvious pointers to her, this was before she saw the full blown meltdowns in the house.

 

Sounds like the consultant involved just isn't tuned in!!!. Hope you get somewhere soon.

Jb

[ksasnic]

can't we all get together and take all our views to the european courts for the breach of our childrens human rights or something ?????? fed up too with beating my head against a brick wall... good luck and nil barstardi corborondum (or words to that effect !!

[sue45]

JenRose, sorry I'm a bit late coming to this post, i have to say I'm flabberghasted! How can they say "autistic traits" and not connect the other issues to these "traits". It's like dissecting an orange and saying the pith isn't part of the orange because the colour of it is wrong ...if you see what I mean...I'm disgusted they are blaming parenting skills when you're the ones who are there saying we need help!

 

I hope the other psch treats you all with the care and respect you deserve.

 

Take care

 

Sue

 

xx