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 know of ed psychs who have done this and they absolutely should not. It is very, very, very wrong. Ed psychs should not be diagnosing. And they definitely should not be challenging a paeds diagnosis. I think it is complaint time really- absolutey not on.

Are you in contact with the Paed still? It would be worth contacting them and asking for another appointment where you can run through what the ed psych has said.

Would second Baka's comments in their entirity.

This ed pysch is meddling!!.

Another one here who agrees with Baka. The Ed.Psych doesn't have the authority to challenge a Paed's dx like this - and certainly shouldn't be trying to insinuate that your ds only has difficulties because of you!!

FWIW ds2 is also said to be "an interesting case" because on his own terms he can be very sociable. Twice someone has commented on whether he really does have SN. The first was an OT's assistant who said "I can't see anything wrong". Yet the actual OT can see a lot of sensory difficulties. The second person was someone who was basically comparing ds2 to ds1 at the same age. It certainly raised a few eyebrows at the multi-disciplinary meeting.

Ds1 (whose dx I don't doubt for a single second) is now very keen to interact with other children. His teacher tells me that he even has a little group of friends. The problem is that he doesn't always know the right way to go about interacting with others.

I second Baka's suggestion to contact the Paed (or other pro) if possible and talk about the Ed.Psych's comments.

I agree with the others about the ed psych and I also wanted to point out something from a multicultural perspective.

Not all countires or cultures stimulate their children like we do here. We focus on independence and individiuality but in Japan they focus on dependence and belonging to a group. I can't find the book now but last year I was studying this sort of thing and there was one culture I read about where the child (0-2)has very little eye contact with the mother and the adults don't speak to the child either. The child is generally seated upon the mother's knee and she talks to the other adults. These children do not suffer as a result of what in this country would be seen as poor parenting. They grow up to be fully functioning members of their community.

Also don't forget that often when you have a child with SN you often can't/don't want to go to the usual toddler groups for one reason or another. Ds1 didn't go to baby/toddler groups until he was about 18mths old. Even then I often couldn't face going because it was so depressing seeing how different he was to other children - and this was before I knew he had SN. Ds1 himself didn't seem to get much from them either. He didn't pay any real attention to the other children or the toys. Ds2 started going to groups at a younger age. He enjoyed them too - even if only because he had more space to charge around in circles - and so I took him more often. OTOH I now avoid taking him to the local music group as he has a tendency to scream whenever anyone sings. If he'd been NT I would probably take him every week.

To an outsider it looks as though the obvious conclusion is that ds2 is more sociable than ds1 because he went to more toddler group sessions etc. In fact ds2 only went to more groups because he was more sociable etc IYSWIM.

Thanks everyone - I have to speak to DS's Paed. WRT writing a statement for DLA, so I'll mention this as well.

What is the MOTIVE of this ed psych???? What will happen if your son's dx is removed/changed. Sounds like she is going to make things difficult for you and possibly for your son in the future. I would rather have an incorrect asd dx than no dx at all, cause at least i will get the services with the dx. These services arent going to HURT my child, whether he has autism or not. But NOT HAVING the services will. Ask for a 2nd opinion from one of her colleagues or the head of education psychology. If she is doing this on her own bat, maybe others in her department will get wind of it and tell her to wise up.

If your chid doesnt have autism, you will soon find out when he goes to school and flourishes or when he starts to really interact with his peers. Rather than scrutinising your son, I, in your place, would be scrutinising this ed psych. Of course, if she is right, that is the perplexing question you face, i.e. IS HE OR ISNT HE ASD.

Problem in my opinion is the whole diagnostics of asd. Its so wide and so varied and we are so INTO labels these days. Its an umbrella term for a "spectrum" which is so very vague. At the end of the day, however, as a parent, my only concern regarding my own son, is that he gets the help he needs. If he gets help even though he dosent need it, is far better than NOT getting the help.

On the point of "blame" and not interacting as a child, i have had that thrown in my face too, not only by health visitors but by friends. What a load of crock!!! AS was said in a previous post, we are coming at this ASD thing from a particular perspective, usually the perspective heaped on us by the medical and psychological community, by people who often dont even have kids themselves but a Phd instead!

At the end of the day, i always ask for PROOF. I ask for proof of everything and had my own son's "label" questioned by a private ed psych. But thats another story.

Go with your gut as a mom. It would be utterly fantastic that your son is not asd, absolutely wonderful. But please be cautious in assessing this woman's motives for questioning the diagnosis. Have you asked your paed to actually see how your son scored on the test? Was there any discrepancies??

This ed psych will undoubtedly encounter problems with your diagnostician. Let her handle the flack, not you!!!!

God bless.

Hi mamadada

I don't know what to beleive now about DS's DX. He does have lots of autistic traits, but the triad is dodgy. His teachers don't think he's autistic and other parents of children with an ASD can't see it and now the Ed. Psych. is disputing it as well.

BUT he stll has significant problems with language and learning new skills. If it were a case of everything's fine now, then I would want the label removed but he still has problems. He's made a lot of progress since starting nursery in September but is still streets apart from his peers. I don't want this DX to be removed because a)then we'll be going through the DX procedure again b)any help that we are due to get might be taken away/changed.

As for the refrigerator mother theory, well, DS is my only child and I took my cues from him. I didn't know he wasn't NT until earlier this year. I know I didn't interact or stimulate him enough but that was because he never responded to me or showed any interest in what I was doing. I'm amazed by my friends babies who seem so tuned in compared to how he was. I didn't take him to M&T groups because I didn't want to compare his head shape with other babies.

I don't think the Ed. Psych is going to do anything to challenge the DX just yet, but she's coming to his MD asmt. so will probably give her opinion there. She's asked me to send her his asmt. reports so she can try to understand the reasons why he was DX'd in the first place.

How is your DS mamadada?

Gosh lillypond, i really really feel for you and your present position. I honestly wish there WAS some question about my own son's dx as it was a terrible blow, but thats another story.

All i can say is that since my son was dxd I have learnt a LOT about asd, as i am sure you have. there is NOTHING written in stone, and doctors who say they KNOW it all, basically do not. Human beings are complex creatures and especially children. My own son is making such huge leaps and bounds with ABA and biomedical intervention that I am very hopeful that he will be able to shake off his "label" at some point. I dont particularly care about the label as it gets him services and nothing will give me greater pleasure than going to my original doctor and telling him that his original prognosis regarding my child was "poor".

however, in your situation, as i said, it must be real hard to just sit back and wait. autism cannot be, in my opinion be talked about "alone", there are so many other factors involved, the world wide hysteria of "labeling" and drugging kids, the politics, the money, the greed, etc etc. I have come to take it all with a great pinch of salt. I dont care what anyone says about my own child cause i know where he is going and i have done just about everything i possibly can to help him, despite the NHS/DHSS/GMC!

"Experts" have their place, but in terms of your own gut instincts, no one knows him better than you. I would be very worried in your circumstances, that services may be taken from your son. Of course you would LOVE to have the dx removed, but where does that leave him in terms of help now and in the future? Nobody knows really what kind of help our kids will need in the future, particularly when the state is so unwilling to provide that help NOW when they need it. As i always say, i dont care if they call my son the "creature from the green lagoon" as long as he gets the services he needs and deserves.

In terms of the refrigerator mom crap that may have been insinuated, what a load of bollocks. First "they" say its genetic, then they say its our "fault", what do they really mean, what do they really know???? Not much really.

My son too, is an only child who did not get much interaction. Like yours, he was content on his own and didnt demand like other kids without the label. Never never NEVER blame yourself! I did this for some time and then i just wised up after reading and listening to other parents. Autism is a complete mystery and no one particularly someone within the health service, has any right to make any judgements about where autism comes from.

rant over love, but keep your chin up. Just keep on fighting for what is your child's right. Love him, hug him and tell him that you will do everything in the world to help him, despite others. He will know what you mean. Whether or not he loses his label, he is still the same little guy inside. Labels are man made, children are not!! Good luck and god bless.

Mamadada - that's exactly how I feel. DS was referred to a Paed. because he has a set of problems and the Paed. thinks these problems qualify him for an ASD DX. From reading this board it is clear that while we all face problems with our ASD children, the problems are not always the same ones. As I understood it the MD appt. was for the purposes of assessing where he needs help, so it isn't as if every child with an ASD DX follows the same therapy pattern. Most children that I know of with an ASD are not getting anywhere near what they need or deserve in the way of intervention/therapy anyway.

I think DS's teachers are partly responsible for the Ed. Psych's. reaction because they are so adamant that he isn't autistic. It really annoys me because they will say things like 'but he's fine here'. What they mean is that he doesn't cause them any problems. It's only when you ask specific questions like 'does he put his own coat on at home time' and they say 'oh, well, we tell all the children to put their coats on but with L we just go and get his coat and put it on for him because he doesn't understand what we mean'. Well he's not fine then if he can't understand a very simple instruction that he's asked to do everyday and doesn't copy what the others are doing. I'm so pissed off with the teachers there. I have asked them what happens with using the toilet and they say that all children go in groups. I know DS can't pull his trousers and pants down on his own so there's no way he's going without their help. He must be just standing in a cubicle. When I asked they just say 'well he does go into the toilet'. We practice these things at home all the time but he needs it to be enforced at school so that he knows the smae rules still apply - that sort of thing doesn't come naturally to him.

I'm glad that your DS is making such a lot of progress. It must be wonderful to feel like you are making such a big difference to your child's life. How did you get on with statementing? - I'm sure I remember you posting about it a few months ago.

Hi Lillypond. What a confusing time for you.

Ideally, the job of the ed psych is to gather information from talking with you and often with others (e.g. teachers) and to perform detailed standardised testing all of which helps them to understand a child's strengths and weaknesses. They should then form a clear plan for you and for others involved in your child's care, specifying the best way in which to help your child develop well/combat existing problems, given the results of the testing. There should be some agreement for how this will be followed-up, and they should monitor the success of the plan and make changes to it if necessary.

Of course, ed psychs often do become involved in diagnosis e.g. they may be the first person to receive a referral for a child and may spot indicators of a disorder or difficulty that may need further investigation. A good ed psych will then refer the child to other specialist professionals to follow this up.

There are a number of markers that your paediatrician will have looked for before returning a diagnosis of ASD. It is not quite as straightforward as ticking three boxes in the 'triad', as your ed psych seems to be suggesting: there can be variation in how social interaction problems present. For example, while some ASD children do like to completely avoid social interaction, others actively seek out time with other children then don't seem to be equipped to take part in games and interactions and appear odd. You don't mention how old your son is, but language delay and unsophisticated play would certainly make me want to investigate ASD. What your ed psych refers to as 'lack of imagination' in his play actually sounds very much like a classic indicator of ASD - e.g. often you would see a lack of pretend play (something like using a banana as a gun). And 'significant problems with social communication' is entirely consistent with the diagnosis. So I'm not sure exactly why she is questioning your paediatrician's view.

I want to reassure you that it is extremely unlikely that you could have had a significant impact on his development of these skills by avoiding mother and baby groups. You may be interested to know that the clinical psychology community has long dismissed the idea of the 'refrigerator mother'. Any differences that can be seen in the parenting styles of mothers with ASD children are understood to be a RESULT of (rather than a CAUSE of) poor response from their child.

Hope this all settles down for you.

Oh Lillypond, the more i read of your experience with your little one, the more angry i get. Gosh, i just cant afford to get any more angry than I am now, or I am going to explode!! I only have one thing to say to you about those teachers - How DARE they make any comment on behalf of your son's "condition"? In my experience so far with prospective schools, i have encountered numerous trumped up dinner ladies posing as asd aware assistants who will inevitably be helping to teach asd children. Sorry, but a week or two at a course on ASD does not make a teacher aware of anything much less questioning a child's neurological "condition". Where do they get off? How dare they discuss your child anyway in terms of his diagnosis? How dare they make a judgement call.

Anyway, i digress. The point is, what are you going to do about it??? I suggest you join some on line groups where you can get immediate feedback from other parents. Try the yahoo groups like ABA UK or other message boards. I like the american ones cause they are so in your face and not afraid to tell you what they think. Here in the U.K. we are far too reserved i think. (obviously i am not!) The best info i have received has been from message boards. There are just so many of them.

I know you dont need my advice though. I dont know what i would do in your position apart from spontaneously explode!! My attitude towards diagnosing and the whole autism thing is quickly becoming more and more cynical by the day. Yep, you are so right, most kids dont get what they need and even when they do, "they" try to take it off of them in a year or so, like ABA or a 1:1 shadow. Its all about who screams the loudest and it sounds honey,like you are going to have to start screaming, albeit politely i suppose. Would you not contact your sons paed, the one who diagnosed him and tell him/her what is going on? Maybe ask him/her for a 2nd opinion from the clinic. You seem to be bearing the brunt of all the anxiety that all these other people have heaped upon you. Its about time that those who are creating the situation actually dealt with it, in my opinion. I would not trust the motives of the school either, who intimate your son is just "doing fine", etc. Lets face it, they havent got the resources and arent inclined to go looking for problems when there they dont have to. The loss of your son's dx would probably suit the school board just fine, cause that is one less set of services they would have to provide.

Have you shadowed your son at school for a half day? Will they let you do that? Have you considered or are you able to hire a private educational psychologist to shadow him at school or to do a report on him privately? I know they are expensive and you shouldnt HAVE to do this, but it might put your mind at rest as to what is really going on.

Hard to know as I dont know you or your son, but I think that is what i would do in your position, keeping in mind that the worst thing that could happen is your son is left high and dry with no services when he might actually really need them, if not now, then in the future maybe. One last thing, the stats on learning difficulties in children today is 1 in 4. Its not just our kids who are eating up resources its all the other ones too. So if you want something for your child you have a LOT of competition. The only thing that really is going to set your son apart from all the others with learning difficulties is his label, whether its accurate or not. At least with it, he gets it. I would assume your sons paed is not going to be to pleased at having so many people question the diagnosis. He or she may actually dig her or his heels in and try to retain the dx to save face, if it comes to that. Of course, where does that leave you. You still want to know what is really going on with your son. Any chance of changing schools to one more accommodating?

oops sorry, i know i am already long winded, but are you keeping a written file of all of these goings on? My son was only dxd about 4 months ago and already i have 2 full file folders of notes, memos and letters. I keep track of EVERYTHING, every phone call, every meeting. It has so far, come in very handy as I am in the statementing process. If i could I would take a tape recorder to those meetings.

Hi Fluppy - the way you describe the variations in social interaction problems is very interesting. DS used to be over-friendly with children but was often ignored or told to go away as he didn't understand the rules. I used to get so hurt seeing children laughing at him and seeing him try to laugh back not realising they were laughing at him. It's very hard to explain without sounding heartless, but it's almost like DS doesn't have a personality. Other kids have preferences and moods but he doesn't. They also share experiences and tell tales on one another. DS just can't do these things. He's just like a lost little boy who doesn't understand the world.

From what I've seen of him at nursery he isn't interacting with the others very much at all. He looks at the other kids when we are waiting to go in but doesn't try to approach them. When we go in he's desperate to get to the attendance board so he can put his name on the number 1 spot. I don't know why this is important to him as he doesn't understand numbers so doesn't associate it with being first. Then he goes to the trains and stands very close to other children who run away from him. At that point I leave before I start crying. His teachers are adamant that he is interacting and are making me feel stupid. I swear they think I just took DS to a Paed. and said 'Oh, don't bother with an assessment, just DX him as autistic'.

I really think that he's not trying to interract anymore because he gets negative reponses all the time.

Are you somehow involved with SN education or have you gone through this with your own child?

Mamadada

There aren't really any other suitable schools in our area. We live on a rough Housing Association Estate and the local primary school would be way out of DS's depth. He's at a MS school off of the estate and they have a language unit attached so it should be perfect for DS. I didn't know about the unit when we chose the school so you can imagine I was thrilled when I found out. But it hasn't worked out the way I was expecting. Everyone on the medical side think that he will obviously get a place in the unit because he is the type of child that the unit was built for. However to get in the unit he needs a statement, but he's been turned down for assessment. His Paed. requested a statement but SENAT don't think that he has significant needs after reading the Paed.s report. I am so mentally exhauseted and pissed off with the bloody battles right now that part of me thinks 'well f*ck it then, if that's what they think let them put him in a classroom environment and see how a teacher copes with trying to teach a child who cannot epress his needs and cannot understand a word that is said to him', but then I realise that DS will suffer if I do this.

At the moment we are financially overstretched so can't fund anything privately but I've applied for DLA, so fingers crossed sometimes soon we can afford to look into private services. I don't think I did a great job on the forms though. I sat here on Wednesday afternoon to rush them through after seeing the Ed. Psych. I know it's in poor taste but if his DX is removed it could have an impact on his claim. It's bloody unfiar as his problems are still the same, I'm not exagerating anything. Anyway I was still filling the forms in at 8am Thursday morning so really rushed the end bit. I doubt if I'll be appealing if it gets refused as it was one of the most demoralising things I've ever done.

Good idea about keeping records. Haven't done this yet but will start.

Lilypond - only just read this. You poor thing. I am utterly shocked to be perfectly honest as it is not the EP's job to diagnose or dispute for that matter.
As you know my dd is also a very "complex" little thing so my heart really goes out to you.
I agree that a full assessment would be a good way to go as it will put your mind at rest.
I just cannot believe in this day and age your parenting skills are being put under scrutiny I had very bad PND after ds (7 and nt) and still beat myself up for not interacting with him as much as I should have. He is a very social, chatty boy and has done him no harm whatsoever!
I have spoken to you many times offline and know how much love you have for your ds. He means the absolute world to you. Don't listen to the EP and take it further. She has stepped way out of line I think.
You know where I am if you need to talk. Lots of love B xxxxxx

Have only scanned this but PLEASE don't send her any reports etc, its NOT your job. If she wants to interfere then let her go and do it herself. I have NEVER known a child to be dx ASD that is incorrect and I have known MANY children over the years since DS was dx. There have been plenty who have not been dx thanks to interfering and misinformed teachers and other professionals. Just because your DS interacts with other children doesn't mean that it is typical but could well be "disordered" in some way. We had a sceptical SLT but at least she didn't interfere.

I have a friend whose child was dx with autisim. (she is over 4 and has about 2 words). When she first saw the Registrar Doc they were told it wasn't autism again cos she did not have the classic symptoms (was very social). They were then referred to the consultant who very quickly diagnosed Autism.

They are a lttle suspicious of the dx because two experts in the field disagreed albeit the more senior medic make the diagnosis.

Every child with autism is different because they have gaps and splinter skills and each child has a different variation of these. Everytime they start to question your child's dx you might want to say that he is severely delayed in self help skills and motor planning, If you can speak the autism "language" you may be able to keep them from pushing you around. Autism is more than language and social problems. Its in the school's interest to take your sons dx away, but it sure isnt in his. i am sure that there are hundreds in not thousands of parents going through what you are going through right now. It is maddening to think about.

Have you considered going to social services and asking them for financial help to get a private ed psych to help in this battle? If you went to Citizens advice bureau or similar they may be able to advise if monies are available to enter into a tribunal with school about your sons dx. Its worth a try and all they can say is no. I really really believe that an outside non "board" decision is needed here.

Thank you everyone for your support

Blossom - I felt guilty for ages thinking that I had neglacted DS, but now feel it was a mixture of PND and him being autistic. It's so hard to bond with your baby when they don't look at you, smile at you, reach up to you etc.

The EP didn't directly say that I had neglected him but I think it was a bit off to ask if he had had much interaction and then to say that neglected children often need their environments changed before they thrive. DP has a really thick skin but he felt that she was 'getting at something' as well.

I was really sorry to read on another thread that your DS is being bullied. I do hope it's nothing too serious and that it's sorted now. As if you need more to cope with.

Davros - You're absolutely right. I have to speak to the Paed. WRT DS's DLA statement so I'll tell her that the EP would like to see the reports and she can send them if she thinks it's appropriate.

I SOOO know what you mean about trying to interact etc. I didn't much either with DS when he was small and we tried playgroups for a very short time, just long enough for me to be SURE he was different. I remember the first SLT we saw saying "off you go and interact", ha ha! So I tried, DS turned the light off and left the room with me still inside interacting away!

Hi mamadada

TBH I really don't have the strength ATM to deal with tribunals and the like.

Why is it in the schools interests to take away his DX? I know there's probably an obvious answer to that.

God it makes you feel like shit though, doesn't it Davros. I spent the first 3 years of DS's life trying to figure out what was missing from me.

Yeah, you just think that if you try harder and you're more fun it will work but..... Wish he'd bloody leave me alone now!

Yeah you always blame yourself. Which is why in a way it was a relief to get the DX because it was proof that it wasn't my fault.

Lilly its in the schools interest so that they can save money. As i said before it is NOT in their interest to encourage willy nilly that children be diagnsosed with a very EXPENSIVE label. quite the opposite. They all have budgets to keep and are stretched already. I bet if they get even a sniff that a child's dx could be overturnd that they would rather push for it to be overturned rather than have the label remain. Labels are expensive to them. Not that its any of their damned business anyway.

Just reading through the other posts. Its awful that we as moms/dads have to go BEGGING doctors for a dx, a lifelong "condition". That often we have to beg clinicians to give our children a condition label which will probably last a life time. Its utterly appalling that once we get that label, that there is very little offered after all our hard work, for our kids. Oh dear getting angry again. Think of bluuueee think of blue.