Opinions needed on letter to mental health team

[Kelly]

Hi everyone, I have been away from here for a little while, I have been having a really difficult couple of weeks and I'm finding it hard to cope with all the things I'm having to deal with. This first bit is a bit long so if you want to skip to the letter it's in bold below.

Anyway last Wednesday my husband and I went to see our daughter's psychiatrist (the one who did an initial assessment back in May) and also her play therapist (I couldn't figure out why she was going to be at the appointment but we soon realised what had gone on).

For those who don't know I have been trying to get my daughter assessed for Asperger's as I believe she has it (same as me, my mum says she is like a mini me at that age). So we saw a psychiatrist for about an hour but that assessment was more to do with her extreme reaction to medical procedures but I brought up Asperger's as a possible underlying cause (particularly the sensory aspect). The psych took down alot of info, referred her to a play therapist for the hospital problem and an occupational therapist for the sensory issues and also wrote to the school asking for a full report and also asked them to fill out a childhood autism test. After 2 sessions the play therapist told us she could not help our daughter that her issue was too complex for therapy but that she would continue to see her incase she made a breakthrough. I thought it was strange at the time but shrugged it off as I so desperately wanted my little one to get over the issue so we could find out what's wrong with her kidneys and how to fix it.

Fast forward 5 months and the OT has confirmed she has significant sensory issues relating to sound, textures, tastes and that she needs alot of physical movement to keep her in an alert yet calm state (basically after sitting still for 20/30 mins she needs to move about alot or she can't concentrate). We go into the appointment and they tell us that the school report indicates no problems, that she is a lovely girl and they have no concerns, on the autism test however the teacher has put (under the section asking whether there are any concerns) "Only with regard to maths conceptual understanding and some aspects of receptive language". They skipped over that quickly and told us that the play therapist (Susie) has been assessing her all this time on how she plays and her conclusion is that my daughter has a very good imagination, good eye contact and plays in a socially accepted way. I tried to bring up several issues all of which they had an answer for, when I asked about her innocence/ young mind as to us she hasn't matured much since 5 years old and continues to carry a teddy bear around, talking about it as if it's a real person (she understand it's not but I hope you know what I mean) they said some children can be very innocent and some have imaginary friends. When I brought up several issues of misunderstandings they said all children are like that, when I brought up her obsession with monster high they said all children have favourites, when I stressed just how obsessive she is over it they shrugged and said some kids are more passionate then others.

Basically every issue she has they had one of the following answers for "all children are like that sometimes", "that's normal behaviour" "well she is an only child so..." "because she's the center of your universe..." the general gist they were getting at was that she was 'normal' and was just a spoilt only child as a result they refused to send her for a formal autism assessment.

So what I want to know is whether the letter below that I've typed to send to them is over the top or too nasty or is it okay?

Dear Dr A / Susie A,


You will find enclosed the details of the relevant people at the hospital as requested by you on 3rd October 2012.

Also enclosed are the NICE clinical guidelines on autism (given to me by the national autistic society), I suggest you read them and reflect on how you have dealt with my daughter's case, taking note of the fact that it is generally the parent/carer's concerns that should be of greatest influence not that of a school or any other setting. I would also like to put in writing my complete disagreement and outrage in the way my daughter was secretly watched / assessed during what was supposed to be therapy sessions for a significant problem with medical procedures. I would also like to point out that she was observed playing / interacting with an authorative adult and not other children so that is really a moot point that she can socialise in a 'normal' way.

I have spoken to the national autistic society and their advisor was as outraged as I was by how this matter has been dealt with. They informed me that my daughter is entitled to an assessment and that any information collected from the school setting should only be taken as a means to see whether a child will require additional help with school rather then a means to decide on assessment / diagnosis. I would also like to point out that my daughter's teacher stated she has issues with receptive language, the definition of which is as follows "Receptive language is the comprehension of language - listening and understanding what is communicated. It involves being attentive to what is said, the ability to comprehend the message, the speed of processing the message, and concentrating on the message. Receptive language includes understanding figurative language, as well as literal language. Receptive language includes being able to follow a series of commands. " which is a key issue with children on the spectrum.

The NAS advisor completely disagreed with your view that 'autistic children are not able to conceal their problems within a school environment', they have in fact found it to be the opposite and that the majority of high functioning children do in fact cope reasonably well in school and have significant problems when outside of school as such more often then not schools do not pick up on anything. As such they have advised me to seek a referral directly to an autism specialist explicitly stating that only someone trained in autistic spectrum disorders has the right to diagnose it. They also questioned whether either of you has that specialist training based on what they consider very stereotypical negative views of the condition and how it manifests particularly in girls.

Mrs Kelly *Surname*.

So too much? Or just right?

 

[Kelly]

Just an update on this, I changed the letter slightly, just a few words here and there and a request for the school report and a copy of the notes they took during our meeting, anyway I sent that to them a couple of days after I posted it on here. Yesterday I received a thick letter, containing one school report, a copy of the notes from the meeting, a copy of a letter sent to my daughter's GP(I'm furious about some of the lies in that but not relevant here), a letter from the people I sent the above letter to AND an appointment with a Dr in their autistic spectrum clinic.

The gist of the letter in response to the above one is that they are very sorry I am not satisfied, a load of BS about how the sessions were therapy based but that she couldn't help noticing Kyoko's level of imagination and use of toys as well as how she interacted with the therapist(I raised this point in the meeting that her imaginative play is 90% copied from films/tv and that it seemed they were looking more at the traits of the lower end of the spectrum). It also states that they discussed it with their manager who has agreed to a second opinion, I bet this is how it went;

Susie: Uh-oh look at this letter
Dr. A: What do we do?
Susie: Lets ask the manager

Manager(reads it along with the guidelines): Well we'd better send her for an assessment because if they go somewhere else and she gets diagnosed all of our butts will be on the line for negligence.

I just have to hope that the Dr we see isn't going to be biased and almost instantly say no she isn't on the spectrum just to protect the other two. The in laws have said they will pay for a private assessment and whatever it takes for her to get the help she needs so if this Dr is another ignorant idiot then we'll just go private. I can't believe the lengths I'm having to go to, it's ridiculous, I'm just so thankful for the national autistic society and their advice!

 

[NeverEnder]

I think the letter seems just right; To the point and well-written.

 

[Soup]

You've shared many details of the exasperating & frustrating treatment you & your daughter have experienced in trying to get a proper formal assessment for her. The stress of this fiasco must be weighing on Kyoko as well. In light of al you've been through, I find the letter to be more than reasonable. You don't go off on any insulting & accusatory rants & you are very clear as to what your grievances are. I do hope they take it seriously & work with you to either find a better resource for you or correct their mishandling of your case.

As for the difficulties in assessing young children for Asperger's, however, I can see where it is difficult. Many of the behaviours you describe can be typical of normal children & they mature in different areas at different rates. As an Aspie yourself, you are much more likely to notice the ways in which these typical behaviours are in fact atypical in your child. I know what you're seeing because I remember watching my son when he was that age & saying to myself. 'something isn't right, here...'. No matter what I'd place on the table, he'd reach out & carefully arrange it into some kind of tall structure. Getting him assessed back in those days here in QC was simply not a viable option & considering the challenges you've faced, the system still has a long way to go!

 

[Arashi222]

Kelly:
OMG that letter is great. I think it hits the best points. I also think that you did the right thing. By getting people who are actually involved with ASD's involved. Especially someone that knows more about girl aspies. I hope that things get better. I know we here are all rooting for you. I wish you the best here. As I have said many times I am sooo much like your daughter in a lot of ways at her age. I have AS, You have AS. coming from someone who actually spent time with the DSM IVTR I suggest that they actually do their darned jobs. I am still in need of greater supervisor for my career and I can see it. But then again I have studied the DSM for a long time for fun. Hugs I hope you get her in the right place and that she gets her assessment because coping strategy at a young age are much easier to implement than in adults.

 

[Kelly]

I've decided to reply in this thread rather then clutter up the 'how do you feel' thread. Yesterday I was all over the place and as is always the case it took me a long time to fully process what had been said and what happened, with the help of my husband.

We were under the impression that we would be seeing a community paediatrician specialising in autism at what was supposedly an autism spectrum clinic - wrong, my husband spent half a day finding out alot about the Dr, she is actually a paediatric cardiologist and has probably just taken a course in autism and got some half assed certificate to say she can diagnose, that is a whole big difference to specialising in autism, so no she does not, she specialises in cardiology BIG BIG difference. Also having someone come in for an hour or two to deal with autistic children is not an autism clinic!

The first thing she did when we went in was inform us that we were supposed to see her at 2pm, that the mental health team had messed up and double booked us but because we turned up first at 8.45am (20 minutes before SHE arrived despite the appointment supposedly being 9am) we got the appointment. So due to that error she had not read my daughter's medical notes in depth and a large proportion of them were missing apparently, she seemed to think this was not a problem.

So she begins by asking why we believe she's on the spectrum, so I expalined my own diagnosis and how she is essentially a mini me, that brought on what I consider an attack on my diagnosis, calling in to question the type of assessment done, "what was my worst score?" 3 times I had to ask her exactly what she meant, first I assumed she meant on the AQ/EQ test, she seemed oblivious to what they were and finally asked what area I am supposedly most autistic in, again I had to ask specifically what she meant, at which point she seemed to get really annoyed and spoke to me like I was an idiot "What...area....such as social, imagination or... similar... did.... they... consider... you.. to... be... the... most... dysfunctional in" drawing out the question like I was really stupid or didn't speak english properly or something.

Then she went on about my childhood, were concerns not raise then and I said yes by my school but my mother who was in denial ignored them convincing herself that I was okay. "So your mother decided not to take you for a psychiatric evaluation?" I answered no and my husband chipped in about it not being a common diagnosis back then that it was relatively new in the wider scope of things. So then she moved on to my daughter, when did we first notice problems, I explained that to us she was normal because she was just like me only recently with my diagnosis have we realised that actually no the things she did/does were not normal and of course her increasing problems socially.

She asked about her development asking if she pointed at things, which she did not, asking if she would come and get our attention if she wanted things I said no she would just try to get things herself become frustrated when she couldn't and only when we heard her begin crying or seem upset did we try to figure out what she was after. She didn't give a crap about when she was little and used to have very specific stims, noises and repetative motions, when she was 2 she would lick the back of her hand and wipe it across her face over and over she ended up with sores on her face because of it.

She kept going back to my diagnosis asking if I was asked X and did they look into my developmental history etc etc, so I informed her that the clinic I went to is affiliated with one of the world renowned experts(simon baron-cohen) and that his research centre is right next door and their diagnostic criteria is much stricter then the DSM...her answer "riiiight"

During the ADOS assessment (which we hadn't been told was happening at that interview at all) she kept leading Kyoko into things, putting words and ideas into her head rather then assessing what Kyoko came up with. So when looking at a story book(with very few words) she would ask her what she thought would happen next, Kyoko turned the page, even when she told her not to. When asked what the man in the picture was feeling she shrugged and said "he's looking at the frogs coming in and can't believe it" to which the Dr said "so you think he's surprised?" and Kyoko of course answered "yes, he's like what's going on here, why are there frogs, arggggh"

When they were doing "pretend play" she got some toys out and asked Kyoko to make up a story, Kyoko just sort of held the toys and went very quiet, so the Dr said "what do you think this character might be?(it was a batman toy)" and kyoko said "uhm maybe a bad guy?" and then she picked up wonder woman and asked what she thought that might be, Kyoko studied it carefully and then said "I think she's a princess because she has a crown, yes she can be a princess!". The Dr then asked what they might be doing so Kyoko again sat for a few seconds thinking before saying "well maybe the bad guy is trying to kidnap the princess". The Dr again lead her into the story by saying "oh and what could this man be if that one is the bad guy?" and she answered "oh he could be the good guy, he could save the princess".

A number of times Kyoko tried to get up from the table to play her own thing but the Dr kept engaging her, kept saying things like "lets pretend that they are going for ice cream" and Kyoko would get uncomfortable and not answer and again try and stand up and the Dr pushed it further "what ice cream flavours do you think they will have in the shop?".

Then there was the little Q & A session she had with her, at this point I could see Kyoko was becoming increasingly uncomfortable and was not maintaing eye contact that she was starting to look off to the left more and more rather then keep looking at the doc as she spoke. She asked Kyoko what ice cream she liked, Kyoko said chocolate, vanilla & strawberry, the doc said somethign like "ugh all together? that sounds a bit yucky" Kyoko chattered away about how it was nice and that when it's almost all gone she mixes them together and it's tasty. The Dr then said "my favourite is mint" Kyoko just blankly looked at her, so she pushed again "do you like that?" to which she answered no, the Dr said she really liked it and chatted a bit about other things, Kyoko was totally not interested. Whenever the Dr asked her questions about herself Kyoko chatted away like mad, when the Dr talked about herself and left obvious gaps for Kyoko to comment she just sat in silence looking bored.

Another pretend play game, they both had to pick 5 items and then make a story, the doc went first and then told Kyoko to make one up but not copy hers. Kyoko made a little story which we recognized right away as a scene from the film a series of unfortunate events, when I tried to point that out the Dr hushed me up and said she didn't want our input until the end. So right at the end I brought it up again and she shrugged it off saying none of us ever really have a truly original idea, when we pointed out she was copying the scene exactly to the letter she just smiled and said it was irrelevant.

Literal thinking was brought up (by me I might add) and the Dr said "well she understood what I meant by pigs might fly". No what had happened was that in one of the books some pigs were flying she asked Kyoko what that meant and Kyoko said that it wasn't real, the doc again led her by saying "yes so what is meant by that is that it's not truthful". When I revealed that I had recently explained about the saying pigs might fly because she'd heard a joke and had not understood it, that meaning had been stored and she will not forget. When I gave an example, when I said oh we can kill a bit of time before the appointment Kyoko asked what I mean because in her mind she thought I meant cut a clock in half or something and it made no sense and upset/confused her. The Docs explanation for that...all children think that way to a degree. She also said because of my literal interpretation of things I was making it worst because if Kyoko says she was strangled at school (an example I brought up about misunderstandings) I'm taking that literally and reinforcing that language. I of course almost screamed at the woman but calmly told her that when Kyoko told us about that I knew straight away that it was likely a misunderstanding, which it was a boy had pulled her by her cardigan which to her felt like being strangled. I said this sort of thing happens almost daily she misunderstands what's said or done and then it is a huge drama and it takes me hours to get her to calm down and understand what really took place...and the docs response? apparently I empathize with her too much?!?!

I could go on and on, the point at which my husband almost lost it is when the doc smiled and said "besides she doesn't look like she has asperger's"...I did lose it however and said "oh really and would you like to explain what a person with Asperger's looks like then? Do I look like it?". I swear she almost crapped herself and totally backtracked on her words "oh I didn't mean look as in look I meant uhm that on the ados uh she doesn't appear to be on the spectrum".

 

[Kelly]

She had some downright disgusting solutions for us, when I brought up Kyoko's monster high obsession she said it was down to us that we allow her to do that. Why dont' we buy other toys, again I flipped and was almost shouting at the woman that she has plenty of other toys the only toys she does want to play with are the monster high ones. When I asked if other 7 year olds carry around a teddy bear again that was OUR fault..."Well other parents would at around age 3/4 TELL the child that teddy MUST stay at home, that it is not leaving the house anymore"...I simple replied "what kind of parent would do that to their child, upset them so much by denying them a simple bear?"....apparently it's very common and that because she's allowed to take it out with her she's using it as some sort of crutch, that she is not being allowed to develop self calming/comfort and she's using the teddy...total BS, yes she holds teddy when she is upset/crying but it's more of a little friend to her then anything, teddy has to have new clothes when she does, a little present on her birthday(so she doesn't get jealous) etc.

The Dr basically said Kyoko's problems are a combination of her personality, her being highly sensitive both physically and emotionally, severe anxiety and the way in which we respond to all of that. My husband asked why she would have anxiety, where did it come from etc...the doc smiled again and just said "her personality" and then mentioned maybe she has a demand avoidance problem too but we can "just read up about that on the internet or get a book or something to help you understand how that works and how to deal with it".

I just cannot even fathom how this woman is any kind of a doctor and initially I thought maybe it was me and I'm seeing things that are not there(as she pointed out) but now I've processed all that was said and done I know what a complete asshole she is and I genuinely believe she was there just to say NO and cover the other 2 people's butts. She had the nerve to ask us whether we would like to start going to therapy sessions with Susie again, I could not believe it, it was Kyoko who piped up and said "No, I don't want to see HER again she is not nice at all".

I've been in touch with a Dr who's special area is autism and she has a son who has asperger's and she also offers counseling to those on the spectrum so she knows what she is talking about. She's agreed to an initial consultation for ?50 and she will not suggest a full assessment unless she is very confident that the result will be positive(so we don't have to fork out ?450 to be told No she's not on the spectrum). My husband was so angry yesterday he couldn't speak but he said earlier that if she gets the diagnosis then we are taking all 3 of them to court and he will not stop until every one of them is sacked but particularly this last doctor for how she treated me.

 

[Kelly]

Just a quick update, we saw the private specialist today and she said Kyoko is on the spectrum but they don't have a diagnostic appointment available until late Feb/ early March. She is sure my husband is an aspie too, something we've both been wondering but didn't take any further because of his mum's total denial. Anyway it was really good, she was so lovely and if anyone wants to speak to a councillor who specializes in ASD's then let me know and I'll send you her details, she works with people around the world via Skype/ email so it's not UK only.

 

[Kelly]

Another update for this seeing as it's more of a diagnosis journey now and not just about that one letter (I do have another one I need opinions on before I send it off, I'll post that up closer to the time I'm sending as I'll probably edit it alot).

Got the report from the idiot cardiologist doctor I spoke of in earlier posts, she lists Kyoko's problems as;

1.Mild cognitive rigidity
2.Anxiety
3.Over sensitivity to sensory environment leading to emotional outbursts usually at home.

The report goes on to talk about my diagnosis, where I had it done etc, this is a report that has been sent to various health professionals AND Kyoko's school I hadn't so far (I was debating whether to or not) told them about my Asperger's, so of course I'm really really angry about that.

It goes on to talk about her early development how we had no concerns but that she had poor use of pointing and joint attention and poorer domestic pretend play, but that there are no records of her development to draw on(uhm because we did not know something was different as she was our first child and she was just like me and I didn't know I had AS back then).

She then goes into the ADOS assessment where she contradicts herself...."was able to sustain a conversational exchange. The only difficulty that Kyoko demonstrated was reluctance to ask me about any of my own thoughts and feelings."...well then not a sustained exchange then is it, you ask her about herself she answers, you make a comment about yourself she doesn't engage.

I was outraged by the scoring, she gave her no points for stereotyped use of words or phrases because she didn't use any AT THE TIME, I explained this during the assessment, that like myself Kyoko tends to only have vocal stims/echolalia when at home relaxing, she's far too aware of what is/isn't acceptable to the general public. She gave no points for the section titled 'pointing' yet it clearly states in her report about the lack of pointing. Most shocking was no points for Stereotyped behaviours and restricted interests the sections of which are - 'unusual sensory interest in play material/person' - I told her she's always sniffing things and sometimes licks things. 'Hand and finger and other complex mannerism' - you know 'stims'(she didn't even know what that word meant!) she has plenty of those just currently not what is typed in black and white "hand and finger". Excessive interest in unusual or highly specific topics or objects - two words Monster High, I told her about her obsession and still she scored 0. 'Compulsions or rituals' - 0 points despite me telling her about several rituals she has...it was a total farce!

Then the best part she then has in the report that Kyoko "may have some mild demand avoidance but that there is nothing to suggest an ASD"...really?! PDA is considered part of the autism spectrum! Then she goes on to give us the title of a book about that and in capitals PUT IN ISBN AND PUBLISHER...obviously her secretary messed up and didn't bother to look it up, typed it out word for word lol!

We have an appointment on 20th of this month for the ADI-R assessment with the charity I mentioned who do know wtf they are talking about but we are having to pay for it, ?400! Kyoko's doctor said the NHS would not fund a charity and advised me to seek an assessment via the NHS..uhm no thanks been screwed around enough already.

Kyoko's occupational therapist called last week to see how she was getting on at school since her report / suggestions I told her nothing has changed so she said she would make a referral to speech and language therapy (because of the reciprocal language problems) as that might to put it bluntly scare the crap out of them, it's that little bit more official as her report only has suggestions not demands. She did say if SALT would not accept the referral (because yet again she's 'not severe enough') then she would go back into school and tell them politely that they need to be making adjustments.

We had a letter out of the blue from the SENCO(special educational needs officer), offering Kyoko a place in the musical therapy group starting next week in school to help develop 'team work and confidence'. Can't see what it will do but Kyoko is keen as it's singing, dancing and playing instruments.

 

[Divrom]

What a ridiculous journey!

Is there not a hospital near you that has a specialist Autism/ADHD team, or anything like that. For example, I know that at Kettering Hospital they have something like the Autism & Aspergers team, through whom I still see a clinical psychologist.

It's still NHS, but a lot cheaper and at least they know what they're actually looking out for.

 

[Kelly]

I didn't know Kettering hospital had a specialist team, that's closer then great ormand street(according to NAS that's our closest hospital with one). There is the croft clinic in cambridge, that's right next to fulbourn mental hospital, it's a clinic specifically for children with behavioural and developmental problems and according to NAS they have an autism team. The thing that's putting me off is our previous experience with NHS autism teams i.e the cardiologist. The actionforaspergers people are wonderful, Elaine and Kyoko got on so well and she knew so much about it all because she has two sons on the spectrum, so she not only has the official training (MA in autism PGC in Asperger's) but has the life experience too.

It's the emotional/stress side of things too that's stopping me going NHS, having people telling you that your child is to put it bluntly messed up because you have Asperger's is upsetting and not something I'm ready to potentially go through again just yet. I'm hoping the croft clinic will be different, we went there last summer for a talk about sensory processing disorder (they wouldn't give us an appointment with an OT unless we went to this talk) and they more or less said sensory processing problems go hand and hand with autism, they tended to say a 'child on the spectrum' and 'children with autism' during the talk so I'm hoping they are more clued up about it. The idiots at CAMHS were saying that she just had a sensory processing disorder (probably just because the OT had stated she has significant sensory problems so they couldn't deny it) they said children can just have that, when I said that was true but in general children with SPD will be on the spectrum somewhere they just shrugged and said that she was not showing any other signs of autism.

My husband is saying once she has the diagnosis from actionforaspergers he's going after the CAMHS team and is going to demand they pay every penny back. It's not going to happen though, they won't admit they were wrong, they'll just try and swing it as "a difference of opinion". I'm going to go to the press if it comes down to it, I'm not going to let it drop, they cannot be allowed to get away with this, how many other people have they done this too? People who will just accept it and then their child struggles through life undiagnosed because of a bunch of ignorant fools.