Confusing Ed. Psych. Appt. Don't know what to make of this

[Lillypond]

We had a meeting with the Ed. Psych today and she feels that DS's ASD DX is wrong. IHO he doesn't have the triad of impairments because his eagerness to interact with other children is too strong. She feels that he has significant problems with social communication as he hardly uses any verbal language and that his imagination is lacking as his play skills consist of copying other children.

She's asked to come to DS's multi-discipliniary asmt. in January as he's 'an interesting case' and she'd like to get to know the Paed. who DX'd him.

Then she really upset me . She asked if DS had spent much time around other children before starting nursery. I told her that he hadn't, but didn't want to go into details about me being depressed because of his head shape and avoiding other children for the first few years of his life. Then she said that she would like to come back in the new year and do some tests with DS. Not IQ tests but general tests to see whether he's funcitioning age apropriately. I hate the tought of this, but knew it was coming anyway. BUT then she said that the results wouldn't indicate his lifetime potential as some children who haven't been given much stimulation in the way of toys, or who have perhaps been left in a cot alone without interaction may thrive once their environment improves.

I don't know whether I am being too sensitive, or it was a bad choice of words on her behalf, but I feel that she's saying that DS isn't autistic but he's delayed because I haven't stimulated him. I'm really worried that this true as well. I don't want her to come to his asmt., I just want the DX to be left as it is.

If I'm absolutely honest I don't feel that DS's DX is correct either, but I'm comfortable with it now. I don't want to go through the DX procedure again as I've only just come to terms with this DX.

Has anyone else had their child's DX challenged like this? Am I mad to not want it removed? What the purpose of an Ed. Psych anyway?

I think that there's a lot of denial involved in the school's position. You seem to find this quite often with schools, though by no means all, they just think they know best and they don't like to be challenged. It also means they have to face up to the work and commitment involved with having a child with SN in MS, no picnic for anyone!
We didn't really have to fight for a dx, it was so bloody obvious! Mind you, our NHS Paed didn't give clear ASD dx and we saw Gilly Baird privately who did, but when we went back to NHS Paed he was wonderful (and has been ever since) and totally supported us, it didn't take long lucky for us.

Woo, Davros really hit it on the head, i should have said that! "they dont like to challenged". As the nursery teacher said to me a couple weeks back when i went to look at her nursery "you seem to be very well informed about asd". ?????? Uh, yes, wouldnt she, if she had a child with asd? Duh! But it goes farther than that. As "mere" parents how are WE supposed to know what a child with learning difficulties looks like? Yet, the glorified dinner ladies at the nursery (assistants) are charged with the responsibility of teaching my asd son!!!! This particular nursery head teacher was the senco and said she was very aware of asd, after having completed a three day course. She even said she had "done" ABA. Sorry, you dont "do" ABA, you use it. ARgggh. Just like men with Phd's who dont have any children, tell us that we are refrigerator moms and thats why our kids are autistic.

I too have a masters degree and was able to shut this particular woman up in her patronising tone. Not that I am any; smarter than she or anyone else, but I had the same educational credentials, if not higher, than she did. They "understand" this. They understand the "language" the lingo of asd. Use it to its full benefit when talking to these people.

But really, as I and others have said, you realy might think about leaving this problem to be sorted out by those who caused it in the first place. I can guarantee that when this ed psych comes to your paed and asks her to reconsider her original position, she is going to get an earful!!!

Lillypond, sorry only just caught up with this thread. I am sorry you are having yet more hassle with everything. I do sympathise because we don't have a diagnosis for Ds2 and the opinions of the different therapists and pyschologists vary a lot. At one end we have the clinical pyschologist and speech therapist who I think both think he's autistic. At the other people who know him well like the music therapist and portage worker don't feel he's like the other autistic children they have worked with and the educational pyschologist who thinks he has a language disorder rather than asd. Then the people at the Dyscovery Centre were amazed to think anyone could think he was autistic. Interestingly the paed seems to base his opinion on whoever he last spoke to - even I can change his mind . Sorry that's not really relevant but just wanted to say I know how you feel.

Plus the other thing I am 100% sure of is that if a child is going to develop normally they will do so unless subjected to severe neglect or abuse. Whatever the problem it is not your fault.

my personal opinion on the label and peoples experiences with difficulty in diagnosing is that the label is just that, a label. Yes they use all their diagnostic screening methods but I think "autism" is a catch all phrase for a myriad of different difficulties. Many children can be on the "spectrum" but where exactly are the boundaries of the spectrum. It is so terribly vague. Its not written in stone and any paed who has experienced difficulty in diagnosing will support this view i am sure. Autism is an enigma.

Lily, just wanted to say too, to make sure you present your son at his "worst". If you encourage those who are questioning his dx, that he is great at this, wonderful at that, etc, they will have more ammunition to remove his services.

Its sort of like what you learned when you had to fill in his dla forms. You have to show your child at their worst, cynical yes. Realistic yes! I am going to be appealing my sons dla as they refused it. Unbelievable. He has a bullet proof dx yet they refused it. His own GP said his prognosis was poor and that he was severely "disturbed". I mean what more do they want? I have to remember to write down all the things i forget about which happen during the day, that other parents dont have to worry about. Like..if i leave the gate open and he is in the living room, he will climb up the stairs or try to open the locks. Like ..when we go out side for a walk and he falls to the ground cause he wont walk with me. Like...when he wont sleep in his own bed and we have to get him to sleep downstairs and tippy toe round him. Like....so many other things. (wannabe supernannies please dont respond to the above cause we have tried everything!!)

I dont take him to mother toddlers much anymore cause all it is doing is teaching how to misbehave. As soon as he enters he goes mad, running for any exit.

there are so many things, if you sit down and think about it, that parents of kids without the label dont have to do/worry about. Write them down!!

Thanks so much for all your responses.

It hadn't really occured to me that DS would cost the school more money. I just assumed that what he needed would be payed for by the LEA and the school wouldn't lose out.

Socci - DS is 3.10. It's so unfair when your child's overlooked just because they don't seem to have behavioural problems. There is another boy in the nursery who doesn't have a DX but has lots of problems. I would say he's got classic autism as I can see the similarities between them but he seems more severe. I may be wrong though. What annoys me about this situation is that DS only gets any help if this other boys is getting it, so when the SENCO came in to see him I was told that she would be looking at my DS as well and when the EP came in DS had to go in the morning rather than his usual afternoon so they could both be seen together. Both were brough tin for the other child and DS was just seen as an afterthough. I don't begrudge this child one bit but I'm annoyed that they've done nothing to help DS and he is the one with the DX. How dare they just dsmiss the Paed. opinion because they don't agree with it We haven't applied for a statement as the Paed. did it on our behalf. He was refused an assessment as SENAT didn't think that the Paed. was convincing enough. I am going to reapply though because he will need a statement to get into the Language Unit.

Saker - You and Blossomhill are probably the 2 people who I've spoken to most about DS and I really felt that he fell into the same camp as your DC. Autistic traits but not really fitting in with an ASD DX, so I was shocked when he got his DX and have never fully believed it. At first I wanted it disproved but I'm now looking at the bigger picture STS. The DX doesn't fully describe DS and it doesn't fully describe any other child who has it, it's just a label. I don't want it removed as it's his ticket into intervention - or at least it should be. How is your DS doing now? I hope that Tuesdays's at nursery are back to normal now.

Mamadada - I'm shcoked that you got refused DLA. Isn't your DS non-verbal? I don't hold out much hope for my claim then.Good luck with the appeal

Socci - Did you use the BHAS DLA For Children on Mental Health Grounds guide. I used this for most of my claim (but then got lazy towards the end), so hopefully I have used the right terminology. I definetly laboured each point, gave examples of how DS's behaviour differs from the average 3 year old, what we have to do above and beyond what's normally expected to ensure that he learns new skills and can cope. I went into meticulous detail about visits to the toilet and meal times and gave alot of supporting evidence in the way of DS's reports from SALT and Paed. and leaflets about autism. I also went into details about my DS's craniofacial deformity and how much extra time we spend on haircuts and hairstyling and the extra expenses we incur. I did explain all of his rituals and routines in detail but I forgot ( with myself) to include a 'day in the life of' diary so they can see just how peculiar and difficult life can be with my DS.

I've been a bit crafty and given DS's teacher a copy of the statement on the back of the form. I've told the DLA that I'm still waiting for his statement to come back from the Paed. so if the teachers one is good I'll send them together. By doing this I'm hoping to put her in a position where she can't deliberately try and sabotage (sp) our application because she doesn't agree. I think she's more likely to say supporting things if she knows that I'll read it first and she can't really change her tune if the DLA still contact her afterwards. I've made it very clear to her in a letter that the DLA only need to know about his difficulties and not about what he can do well, but I was polite about it. If she writes something unsupportive then I just won't send it, but I know that they will probably contact her anyway. She's gone sick now though.

I suppose it will come down to whether the person who assesses it agrees that we deserve DLA. I hope we'll be one of the lucky ones who gets to hear back quickly.

Thanks Lillypond for asking about Tuesdays . I felt a lot stronger last week having done it once and got out of it this week as I have already been twice. So not bad really and I'm glad to see what goes on at preschool from time to time.

I don't think a statement request has more weight if asked for by the parents, possibly less than if a professional asks. BUT if you make the request yourself there are lots of benefits. First you KNOW the request has been made and when, you can then track the timetable and when certain things should happen and you can make very sure that all the information is submitted as well as possible.
Saker, the interventions you describe aren't necessarily for children with ASD but for children with communication issues. I don't think there is anything specifically for ASD only that can't also be used for communication issues and/or learning disability and/or behavioural problems.

Davros

I know what you say about those interventions is true and I have been happy to try them, but part of the reason I think they haven't worked is because of Ds2's other issues with co-ordination and motor skills in general. For example, if he doesn't point because he doesn't have the motor skills to isolate a finger and the visual skills to line up with an object in the distance, it is not the same as not pointing because he doesn't understand that I can't know what he is thinking. If some of the reason that he doesn't interact is because he has very unclear speech and no-one understands him this needs to be addressed as well. When we did the Playcircle thing, they wanted him to do things like jump and down when there was music and stop when there wasn't. He can't jump anyway and that amount of physical control would take all his concentration so that he would completely miss the point about the music. It wasn't a good vehicle for teaching him and that was because he was referred as an "ASD-type" child without any reference to his physical difficulties.

I would be concerned that a diagnosis of ASD would not indicate any of these difficulties and although it might label part of his behaviour it would not sum up the whole in anyway.

I am not saying this is the case with Lillypond's DS but just that I don't feel a diagnosis always helps.

Saker - I always thought motor skills could be part of asd? Please correct me if I am wrong.

BH

Yes I know that motor skills can be a part of AS and ASD and also that you can have co-diagnoses of dyspraxia and ASD. However as I understand it (and I might be wrong) it tends to be less severe than it seems to be with Ds2. He can pick up a recorder and try and blow into the wrong end; at the age of 4 he cannot jump, draw a straight line with a pen, take off his socks, open a door, feed with a spoon very well. Certainly the professionals who deal with him (and I assume they have experience of plenty of autistic children) seem surprised by the level of his difficulties and their therapies designed to help his communication do not take into account that he might have difficulties with these things.

Saker, I do see what you mean. DS has had no therapies yet apart from the group SALT that was organised before his DX (which isn't really working as all the children have such different needs). I'm hoping that therapies will be set up after his MD asmt. I think all the therapies that you mention would help DS, although he'd find the jumping thing hard as he can't really control movement and concentrate at the same time (he has to stop walking to speak etc.). I know he's not typically ASD as he can imitate so if there was a therapy designed to teach imitation he wouldn't benefit. Actually he imitates so well that he would benefit more from being taught not to do it, as it really interferes with his functioning. He will do things over and over until he feels that he has copies someone's movement or facial expression perfectly, and can't stop until he's sure he's got it right.

I still find it hard to understand why any child would be denied a statement when they have SN. It's all down to money

Saker - Yes I totally agree that therapy should be designed for each individual child.
I have a very good friend whose son is autistic and dyspraxic and his dyspraxia is really quite bad. Thankfully all of the pros do recognise the dysraxia as a co-morbid condition and when he attends things like OT they do tend to work on those issues as well as the autism.

In my earlier post I should have said "Certainly the professionals who deal with him (and I assume they have experience of plenty of autistic children) seem surprised by the level of his difficulties and their therapies designed to help his communication do not ALWAYS take into account that he might have difficulties with these things. "

I feel bad otherwise because most of those who have worked with him have made efforts to adapt to his physical problems and some like his portage worker and music therapist have tried very hard indeed. I just meant that when they first turned up to see him they didn't expect that level of physical difficulty because they were expecting a child with autistic tendencies and a diagnosis of autism wouldn't make it easier.

Sorry to go on but I don't want it to look like I am slagging off a whole bunch of professionals who in general have tried very hard with DS2. I hope I didn't get off the point of your thread Lillypond - I'm sure that once people start to work with your Ds they will take his individuality into account. I will be interested to learn what the paed thinks.

Given that dyspraxia is supposed to be quite common, I am surprised myself how few of the people assessing Ds2 have come across children like him before. I can only assume a lot of dyspraxic children are not really getting help or diagnosis very early.

Saker -does your DS have a DX of dyspraxia? Or is it just generally agreed by all involved that he has it? I really thought DS would be DX'd with dyspraxia and was quite surprised by the ASD DX.

I remember 'clumsy syndrome' being mentioned about my sister when we were younger and have wondered if this was a slang term for dyspraxia. I overheard my mum and dad discussing it a few times and I don't think it was a joke, although it sounds stupid now. She has very poor co-ordination and organisational skills and found it really hard to fit in with her peers. She never got any help as she was just seen as difficult by the school and family. DS is soooo much like her, he even looks like her and makes the same facial expressions that she makes, even though I'm nothing like her at all. There's a lot of autism in DP's family though so I wonder if he's got bits of both but doesn't fully qualify either DX.

When is your DS starting at the unit Saker?

Lillypond, no my Ds2 doesn't have a diagnosis of dyspraxia, but it is agreed that he has a lot of characteristics. However they say he might "grow out of it" so they won't diagnose until he's older. I think that the real reason they won't diagnose is because he has a lot of other problems with communication and language and so he doesn't fit the typical "picture" of a dyspraxic child, bright and verbal, yet clumsy. And they think he may yet fit the picture of an autistic child.

Dyspraxia used to be called Clumsy Child Syndrome so that is probably what your parents were talking about. It is supposed to run in families and I think it can also be quite common to have siblings where one is autistic and another dyspraxic. There can definitely be a lot of autistic type symptons with dyspraxia so I suppose it is hard to know where they overlap and one ends and the other starts.

I have just heard from the LEA today that the place is available at the unit so we have to say we are still interested and then hopefully DS2 can start in the New Year. I am going to phone the head of the unit in a minute to discuss it. I am excited and relieved but now all the possible problems are going through my head. How will they understand him? Will their SALT and OT be able to get a good assessment of him without me there to interpret, will he be alright with the transport etc. I hope it will be okay. It will funny at home without him.

Hi lillypond. Just an update on my sons dla. After phoning them and asking why my sons claim was refused, they realised they made a mistake. I mean, they only realised this WHEN i phoned. anyway, he has just been awarded high rate without an appeal, so DONT lose hope. Im away to spend ds's money on a private ed psych report. Easy come, easy go!!