Published on 12, July, 2020
Hi everyone, I have been away from here for a little while, I have been having a really difficult couple of months and I'm finding it hard to cope with all the things I'm having to deal with. This is very long so I apologise in advance for going on and on.
At the beginning of October 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).
Just to re-cap; 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 with the therapist/psych 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 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 after the appointment with the play therapist & psychiatrist I contacted NAS and was reassured that my daughter was entitled to an assessment, so I wrote a letter to CAMHS, outlining my disapproval of how they have handled my daughter's case and included the NICE guidelines regarding suspected autism in children. Low and behold a few weeks later I get a letter from them both stating they have spoken to their manager who agreed to send her to their "autism spectrum disorder clinic". We were given an appointment on Monday that from our perspective was to be a basic interview type thing to take down details,concerns etc, we had no idea that they were just going to do an ADOS assessment. What happened on Monday has upset and angered us both so much that we will be seeking disciplinary/possible legal action regardless of whether or not our daughter receives any kind of diagnosis.
We were under the impression that we would be seeing a community paediatrician specialising in autism - wrong, my husband spent a day finding out alot about the Dr, she is actually a paediatric cardiologist and is not an autism specialist, she specialises in hearts that is a BIG, BIG difference.
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 apparently missing, she seemed to think this was not a problem.
So she begins by asking why we believe she's on the spectrum, so I explained 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 raised 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 and their diagnostic criteria is much stricter then the DSM-IV...her answer "riiiight"
During the ADOS assessment (which we hadn't been told was happening at that interview at all) she kept leading my daughter into things, putting words and ideas into her head rather then assessing what she came up with. So when looking at a story book(with very few words) she would ask her what she thought would happen next, my daughter 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 probably can't believe it" to which the Dr said "so you think he's surprised?" and she 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 my daughter to make up a story, she 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 my daughter said "uhm maybe a bad guy?" and then she picked up wonder woman and asked what she thought that might be, my daughter 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 she 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 my daughter 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 my daughter 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 my daughter 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 her what ice cream she liked, my daughter said chocolate, vanilla & strawberry, the doc said something like "ugh all together? that sounds a bit yucky" my daughter 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" my daughter 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, my daughter was totally not interested. Whenever the Dr asked her questions about herself she chatted away like mad, when the Dr talked about herself and left obvious gaps for my daughter 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 my daughter to make one up but not copy hers. She made a little story which we recognized right away as a scene from the film 'Lemony snickett's 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 her what that meant and my daughter said that it wasn't real, that pigs cannot fly, 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 my daughter asked what I meant 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 my daughter 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 she 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?!?!
She kept bringing me into things "Does mummy every get angry?" "Does mummy ever get sad?" "Does mummy ever feel lonely do you think?" only once did she ask about my husband which was "Oh and do you think daddy might get lonely?". My daughter had no idea what makes me angry, and her answers for the other two "mummy is sad when I'm sad" "mummy and daddy are lonely when I'm not around". When she asked her why she thought people got married she shrugged and said "to get presents" when she asked her why she thought mummy and daddy got married she said "because they like each other of course!". It was all very dodgy, the way alot of the questions were aimed at/about me.
I could go on and on, the point at which my husband almost lost it is when the doc smiled,looked at her 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".
She had some downright disgusting solutions for some of my daughter's 'issues', when I brought up her monster high obsession stating that surely the intensity was not normal she said it was down to us that we allow her to do that. "Why don't 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(after pointing out various immaturity's she has) 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 simply replied "what kind of parent would do that to their child, upset them so much by denying them a simple bear?"and I pointed out that her friends choose not to carry bears around anymore not the other way around....apparently it's very common for parents to stop it 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), she talks to her, she asks me to make teddy's voice so she can talk back, etc, it's all very innocent and not at all some sort of comforter.
The Dr basically said her 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 pathological 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". She also stated that PDA really shouldn't be lumped in with the autistic spectrum because it has nothing to do with autism...I mean I'm not an expert but even I was shocked by her outright ignorance.
I just cannot even fathom how this woman is any kind of 'autism specialist' 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 idiot 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 the play therapist mentioned above again, I could not believe it, it was my daughter who piped up and said "No, I don't want to see HER again she is not nice at all".
So I'm back to square one again with trying to get her assessed by an autism specialist who has experience with girls and isn't affiliated with our local mental health team.
Otter - That was exactly what we thought, the Dr who said she didn't have autism was just going off a checklist and not listening to what we were saying. I still find it laughable that she thinks meeting my daughter for just over an hour could give her any insight to how she behaves, plays, talks, reacts etc. Thank goodness we found the autism charity and got to see actual specialists!
Daddywolf - I'm hoping this will be the exception and those involved will be brought up on their mistakes. We met with the investigator last week and she is from another areas CAMHS but it is also the one affiliated with a very well known autism diagnostic centre so she knows alot about autism. Our ultimate goal is to stop the individuals involved from ever doing what they did to us to another family. In an ideal world all children assessed by the so called autism expert at CAMHS would have a re-assessment elsewhere,not likely though! I do wonder how many other families have been told no it's not autism and have gone away not knowing what to do next and ultimately it's the child that suffers because they will go through life unsupported because of one idiot stating it's not autism.
We r the auties - If the ADOS assessment we had was the standard procedure for it (and not that one Dr botching things) then I really do not think it's appropriate for higher functioning children as it's going purely on 1 assessment and not taking into account all the things parents will be inputting with. For example my daughter was able to do the pretend play parts what the Dr did not take into account was that she was just directly copying a film scene by scene, that is very different to making a story up off the top of her head. Same with eye contact she can manage it in small increments but the longer she has to try and do it the more uncomfortable she becomes and will not maintain it. Again us saying that was not taken into account and it was purely a case of "well she managed it during the assessment"...yeah a 1 hour appointment and it was not constant eye contact.
I really do think an ADI-R is a far superior assessment as it's an interview (that takes roughly 4-5 hours) going over every aspect of the child. Example the Dr at the ADOS did not ask anything in-depth about her obsessions and brushed off her monster high doll obsession as 'normal' wheras the Dr at the ADI-R assessment talked in depth about it and was able to determine that it was not 'normal'. Yes the subject matter is 'normal' but the intensity was not (and that's the difference!). Even little things we hadn't thought about came up, like 'unusual obsessions' we just said no they were all 'normal' subjects, until he gave us some examples and asked us more questions and we remembered allsorts of stuff that we just didn't think applied, like as a 3/4 year old she was obsessed with bins, had to touch them, look in them and in the case with animal shaped ones hug them. Or how she would collect sweet wrappers as they were 'interesting'. Again that's the difference between a so-called expert (i.e not one) who will read off a checklist and someone who knows autism in great detail who knows what they are looking for and can ask the right questions to get the relevant information.
I was worried that our 'private' diagnosis would not be accepted but it was not just some random person doing it, the man is a GP with formal qualifications and training in autism (not to mention life experience as he has a son with AS) and so far no one has questioned the acceptability of it being private (although it's a little more complex then that, they are a charity that are donation led). I really hope your little boys assessment goes well.
As for updates my little girl is doing really well, she's been enrolled in a stage school for a few months now (her other obsession is performing) and it has helped her so much with her confidence and social skills. She performed in the west end a couple of weeks ago in front of hundreds of people and her and her fellow stars were commended on their professional attitude. She took part in a drama festival last weekend and gained a distinction in prose reading, the adjudicator praised her confidence and eye contact (all her hard work really paid off, she'd been practising a lot and her teacher had shown her how to look as if she's making eye contact but not actually doing it).
Since my last post her school have completely turned around, she's now receiving extra maths tuition, attends a play club, has music therapy, has been referred for speech and language therapy and her teacher has become very accomadating over her problems. We had a meeting with her last week and I mentioned that my daughter is having problems reading (we suspect it could be mild dyslexia ) and her teacher is looking into a specialist optician that can check her eyes with different coloured lenses to see if that helps. She said she can take in any fidget toys she needs, earplugs etc, total turn around from pre-diagosis when she was quite put out by the occupational therapists recommendations regarding sensory issues.