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madstitcher101

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Hiya! I'm new here and I need some advice if possible.

 

I have 2 children, a girl aged 8 and a boy aged nearly 5. My son was diagnosed with High-Functioning Autism in January this year. Before we even knew what autism was, we had deferred him from starting school in the September 2011. We had a lot of problems with him and we felt that there was no way he would be ready for school at that time. We had a educational psychologist come to the house to see us and straight away she suspected that our son had autism. Anyway, Early Years became involved, he was offered an enhanced nursery place from the September while he was being assessed and his statement done. He stayed at the nursery until Easter this year and then he started in the local mainstream school, which happened to be round the corner from where we live. Anyway, he just went in mornings. He'd got his one-to-one support and she is really nice.

 

Anyway, onto my daughter. She was referred to CAMHS by the hospital (we got our doctor to refer her because we had concerns about her), and we've had about 4 appointments to date. We had a few concerns about her, we still do. She has a lot of worries and anxieties, is a very finicky eater (she's underweight), has a lot of toileting accidents. We also believed that she also had ASD, possibly Aspergers, but we weren't sure. There are certain things that she does that made us wonder. She has sensitive hearing and certain noises hurt her ears, and she complained that being in assemblies were hurting her ears because of the noise so we withdrew her from assemblies. She constantly walks up and down the room, she flaps her arms and jumps up and down when she gets excited, she lines her toys up, she doesn't get jokes or sarcasm and often looks at you with a blank look on her face. Anyway, at her last appointment last week, I was told by the doctor that after observing my daughter at school for a couple of hours, she didn't believe that she had got ASD. She's got a lot of anxieties and worries but she's not on the spectrum. I'm waiting to receive a copy of that report so I can go through it myself and see exactly how they got to that conclusion because my gut instinct tells me that they are wrong. She obviously doesn't display the signs at school as she does at home, and how can they come to that conclusion like that?

 

Sorry, I am rambling a bit here, so, can CAMHS get it wrong? What would anyone suggest?

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It does sound like she may have ASD. How is she with making and keeping friends, what is she like making conversation. Does she have obsessions? If so does she talk about them alot? When I was 12 years old they said no to aspergers to me because i had a speech and language delay, did she have speech delay? Does she understand facial expressions etc. You could ask a 2nd opinion maybe autism and not specificially aspergers. Have they tested her for fragile x syndrome, usually they do that before a diagnosis of ASD is made?

Edited by Special_talent123

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It does sound like she may have ASD. How is she with making and keeping friends, what is she like making conversation. Does she have obsessions? If so does she talk about them alot? When I was 12 years old they said no to aspergers to me because i had a speech and language delay, did she have speech delay? Does she understand facial expressions etc. You could ask a 2nd opinion maybe autism and not specificially aspergers. Have they tested her for fragile x syndrome, usually they do that before a diagnosis of ASD is made?

 

She has a few good friends but a lot of times they tend to be 'mean' to her and she gets upset and cries. I think certain friends do it on purpose because it is so easy to upset her and make her cry. She won't ever stick up for herself. Yes, she does have obsessions and she constantly talks about them whether you want to listen or not. She also asks the same questions about the same things , could be in the same day or the same week. She never had speech delay, in fact she was quite advanced for her age. She doesn't understand facial expressions and sometimes when you tell her to do something she tends to look blank at you and doesn't understand what she has to do and we have to rephrase the question or instructions. No she hasn't been tested for fragile x, and it doesn't look like they will because they say no she doesn't have ASD.

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you can ask for a 2nd opinion. I was a no to aspergers and yes to autism. ask them to check properly. did they ask questions what she is like with a questionaire. you could ask some people to back up your decision too.

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you can ask for a 2nd opinion. I was a no to aspergers and yes to autism. ask them to check properly. did they ask questions what she is like with a questionaire. you could ask some people to back up your decision too.

 

Would we have to ask for a second opinion in writing? The only contact that we have at CAMHS is the doctor we have been seeing so not sure who we would have to ask. She asked questions and we told her all our concerns about her. The school said they have no concerns, mind you I don't have a lot of faith in that school at the moment due to a few incidents, and we are seriously considering moving both children to a different school.

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She sounds to me like she could be on the spectrum.

She has problems understanding language, although she can appear to have advanced vocabulary, her understanding maybe on a different level hence the blank look and need for you to repeat the question.

She has some friends, but she seems socially awkward and does not understand facial expression, voice tone, gestures, jokes, sarcasm?

She repeats questions or statements [sounds like echolalia which can be immediate or delayed], or she is repeating to help her understand.

She has sensory issues, specifically to noise, but it can also affect sight, touch, smell, taste, balance and co-ordination. So how is she about having her hair washed/cut, or her nails cut? You've already said she is a finicky eater which could be due to smell or taste/texture sensory issues. Is her balance and co-ordination good. Can she brush her teeth, tie her shoelaces, ride a bike or climb a tree?

 

She flaps and walks up and down and jumps when excited.

 

Anxities and worries are part of being on the spectrum.

 

I think it maybe useful to get a second opinion, or a private one.

 

I'll also find the link to the diagnostic criteria for Aspergers, which can sometimes be helpful. Also look on www.nas.org.uk website as they have information about autism and aspergers.

 

I presume that academically she is doing okay in school? Is she reading and writing and doing maths at the level as her peers.

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Another thing that we did was film our son. At the time, about 6 years ago, I thought the film would prove he was not on the spectrum. When actually, knowing what I know now, it made it completely clear that he was on the spectrum.

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Regarding school having no concerns. My son's former schools never had any concerns either. His first school, mainstream primary did have concerns and he was referred to a speech therapist, and educational psychologist. The speech therapist referred him on to the Developmental Paediatrician and Clinical Psychologist and they diagnosed him. But the speech therapist did say that from his understanding of language, his spoken language and his play skills that we should expect a diagnosis of an ASD.

 

I think what can happen sometimes with girls is that their language and social abilities are typically better than boys anyway. So even with difficulties in those areas they can still appear better than a boy with an ASD, if that makes sense.

 

My son's last mainstream school, which was classed as enhanced resource for ASD, never had any concerns. Even when he began vomitting in school due to anxiety, refused school for about a year, and attempted suicide they have had any concerns at all. They were rubbish.

 

Anyway, after our second Educational Tribunal [2009 and 2011], he is now in an ASD specific independent school for children of average cognitive ability. He has speech therapy and occupational therapy [for his sensory processing disorder - which is what your daughter may also have], twice a week. And he is attending almost full time now [he started there in Nov 2011].

 

In school she maybe copying or mimicking the other children [as my son did]. Or be too afraid to say that they don't understand and so they just try to get through the day as best they can and then get all upset when they come home].

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This is the link to the DSM IV criteria for Aspergers.

Diagnostic Criteria for 299.80 Asperger's Disorder

 

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[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV]

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:


    (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
    (B) failure to develop peer relationships appropriate to developmental level
    © a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
    (D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:


    (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    (B) apparently inflexible adherence to specific, nonfunctional routines or rituals
    © stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
    (D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

 

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

 

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

 

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

 

 

However, I think she may also have a speech disorder, or it could be due to delayed processing of auditory information which could be due to a sensory processing disorder. Or it could be both.

 

On standardised assessments on speech and language my sons scores can range from a 2 [where 3 is classed as severe] to a 15 [where 8-13 is classed as average]. He knows alot of language around his areas of interest. But he has huge gaps in language and understanding in areas that are of no interest to him. And he really struggles to ask and answer questions.

Edited by Sally44

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So what you could do is list all the behaviours you see that meet the criteria, giving examples.

Keep a daily diary of what she says and does.

Use a digital camera and film her whilst she does not know.

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She sounds to me like she could be on the spectrum.

She has problems understanding language, although she can appear to have advanced vocabulary, her understanding maybe on a different level hence the blank look and need for you to repeat the question.

She has some friends, but she seems socially awkward and does not understand facial expression, voice tone, gestures, jokes, sarcasm?

She repeats questions or statements [sounds like echolalia which can be immediate or delayed], or she is repeating to help her understand.

She has sensory issues, specifically to noise, but it can also affect sight, touch, smell, taste, balance and co-ordination. So how is she about having her hair washed/cut, or her nails cut? You've already said she is a finicky eater which could be due to smell or taste/texture sensory issues. Is her balance and co-ordination good. Can she brush her teeth, tie her shoelaces, ride a bike or climb a tree?

 

She flaps and walks up and down and jumps when excited.

 

Anxities and worries are part of being on the spectrum.

 

I think it maybe useful to get a second opinion, or a private one.

 

I'll also find the link to the diagnostic criteria for Aspergers, which can sometimes be helpful. Also look on www.nas.org.uk website as they have information about autism and aspergers.

 

I presume that academically she is doing okay in school? Is she reading and writing and doing maths at the level as her peers.

 

She hates having her hair washed and brushed. From start to finish she will moan, saying I'm hurting her and asks if I'm finished every single minute I'm doing it. She hates having a wash especially washing her face and neck. If she could get away with not washing or brushing her hair she would. Her brother is just as bad, maybe worse because he absolutely refuses to have his hair washed most times and it tends to end in a meltdown, whereas she will have her hair washed but will moan or cry if the water goes in her face.

 

As for reading, writing and maths, well she loves reading and writing so she at the level as her peers, although she doesn't like to do the homework for it as she would much rather write about princesses and things that she is interested in. As for maths, well she appears to struggle with that. She struggles with multiplication, adding, subtraction etc. She still doesn't know how to tell the time.

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Forgot to add, yes she can brush her teeth although she needs watching because she won't do it properly otherwise. She can't tie shoelaces but that's mainly because she's never had shoes with laces, they've always been velcro fastenings. Ride a bike, well we bought her a bike for her 6th birthday and she has maybe rode it a few times and it's been in the garage since. She's never asked to go on it. No she can't climb a tree and she never would even try it.

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I feel for you because it sounds like you've got a fight on your hands to get the help you need for your little girl.

 

I am an undiagnosed woman who has been refused an assessment. However, I approached a private autism expert who gave me a private assessment (he cannot diagnose) and although his assessment acknowledged that I show difficulties across the triad of impairments and I passed an Adult Assessment tool, his subjective opinion was that I only have an 'autistic cognitive profile' but that I am not affected enough to warrant a diagnosis. I am quite sure that part of his reasoning was based on the fact that I narrowly 'failed' the Autistic Spectrum Quotient developed by Simon Baron-Cohen and I am certain that he put more emphasis on this tool (proven to be gender-biased) than the one I passed (proven to be non gender-biased) and the way I 'presented' as a child and how I 'present' now.

 

I am now firmly of the opinion that many females are missed in the diagnostic process. There is much debate as to whether girls 'present' differently to boys but this does not mean that the symptoms or difficulties are any less in girls. It is even thought that girls can in many ways struggle more, especially in the teenage years.

 

If you look at the NAS website and put 'Women' into the search box, this will bring up an article about current thinking about girls on the autistic spectrum. There are also a very limited amount of books on the subject. In 'The Complete Guide to Aspergers Syndrome' by Tony Attwood there is a tiny section devoted specifically to girls. 'Aspergers and Girls' may be of interest to you and perhaps 'Aspergirls' although I think this is more aimed at older females. I also think the article on the Tony Attwood website is very straightforward.

 

In many ways I was described as 'no bother' as a young child. My mum loved how I occupied myself on my own for hours, doing puzzles over and over and watching my spinning top. I spoke precociously and precisely very early and was very 'forward' with adults, telling them all about myself. I was described as 'charming'. At school I was described first and foremost as a 'daydreamer' and secondly a 'chatterbox'. I remember my complete confusion at 5 when the head of the junior section gave me corporal punishment for disobedience. My teacher in primary 2 sellotaped my mouth up for shouting out answers in class and then in primary 3, my teacher (the teacher who'd given me the belt) told my parents at a Parent's Evening that she refused to put my work on the walls because 'I can't stand your daughter because she always gets in the way' (I was very disorganised and typically late for everything). I remember hiding in the library area between classes because I was so frightened of her and I developed a stammer, a twitch and began to wet myself. My parents never complained about this teacher and I was still to all intents and purposes 'no bother' as I always tried very hard to please. However, the anxiety problems were starting to take a firm hold. At 6 I was an excellent reader (I read entire books upside down and in mirrors) but I had huge difficulties with maths. At home, my mum would do my maths homework with me and I'd be crying with frustration because I just couldn't understand how to solve the problems. I never 'heard' anything my mum said the first time (I presume this also applied at school but I can't remember) - I remember watching her lips moving and not knowing what she'd said - by the time she was halfway through repeating what she had said I would answer her which drove her around the twist. When learning to eat I used to stab myself until my gums bled with my fork as I couldn't fathom how forcefully to put it in my mouth.

 

I spotted the new girl who moved to the school when I was 7. I knew I wanted her to be my friend so I walked straight up to her and introduced myself 'Hello. My name is Lynda. I am different to all the other children and I want you to be my friend'. I had no notion that she might not want to be friends back but as it turned out she became my best friend until primary 7 when I must have begun to be very strange in the eyes of the other girls and she instigated whatever it was that ostracised me from the rest of the class.

 

I see history repeating itself in other female members of my family and wihout a diagnosis I feel helpless to comment. I do not want them to experience the problems I did without proper guidance and support. I am very glad my son is getting the help he needs but his cousins have the right to that help too and so does your daughter. It is so very frustrating.

 

I'm glad the experts at last are considering girls and I very much hope that someone will take your concerns seriously at some point in the near future.

Edited by Lyndalou

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having difficulties with tying shoelaces,telling time and riding bike all sound familiar to me have you researched looked into developmental dyspraxia??? co-ordination /balance/ fine-gross motor skills are all lacking affected in some way! also finding maths hard to tackle too!

 

XKLX

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Thanks for your replies. I'm glad that other people are agreeing with me on this, that I'm not alone in thinking that camhs are wrong. I am just waiting to get the copy of the report and then I can go through it and then do something about it. When the doctor was talking about the 'blank' look my daughter gives when asked to do something, she made a comment suggesting that maybe she gave the blank look because she didn't want to do what she was asked to do.

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From what you have posted, there are alot of things I can recognise in my own son.

You also have another child on the spectrum.

I think you need to speak with the NAS and decide how to go forward with this, and to gather your information and evidence as advised earlier.

 

Have you looked at the DSM IV Criteria for Aspergers? Can you see where examples of her behaviour fit into this criteria?

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From what you have posted, there are alot of things I can recognise in my own son.

You also have another child on the spectrum.

I think you need to speak with the NAS and decide how to go forward with this, and to gather your information and evidence as advised earlier.

 

Have you looked at the DSM IV Criteria for Aspergers? Can you see where examples of her behaviour fit into this criteria?

 

Thanks Sally. I definitely will get in touch with NAS and see what they say, but I'll do that once I got the copies of everything from camhs.

 

Yes I have looked at the DSM IV Criteria for Aspergers and I can see where her behaviour fits into this criteria. I shall be studying it in more detail later.

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Remember that an ASD is a combination of difficulties which are each on a spectrum. So no two children will present in the same way. But I think, as an example, you can see how both your son and daughter both have speech and language and social communication difficulties - although they may be completely different.

 

That is why I think a speech and language therapist's report [to include some theory of mind assessments], could definately show if she has difficulties typical of an ASD.

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Okay, I now have the reports from CAMHS. So I will just copy it on here and if anyone can give me their honest opinion, would be most grateful.

 

The diagnosis says Anxiety Disorder.

 

"I observed Emma at her school in structured and unstructured setting. The school observation was following parents concern about whether she is on the Autism Spectrum. I was ushered into the hall where Emma was participating in drama rehearsals. There were around 80-100 students. They were lined at the front facing the teacher with the stage to the back. Intermittently some of the year 5 and 6 students were coming on the stage to perform parts of the script. The majority of the younger children were participating in the group singing. Emma was in the second row in the corner of the passageway through to the stage. She spotted me as soon as I entered the hall and tracked me with her eyes until I took the seat. She then looked at the teacher and then looked back at me with querying eyes. She seemed comfortable with the high level of noise in the hall which included children talking and the beat of the music. She participated in the singing and her gestures appeared coordinated as of the other students. Some of her movements appeared awkward as she appeared distracted observing me as she recognised me from her one to one sessions at the clinic. However once she got into the beat of the music her movements were more graceful and coordinated. She turned to look back when the music stopped as the students on the stage delivered their dialogues. A couple of times she checked and referenced to see whether I was looking at the students. She briefly interacted with one of her peers sat next to her and when I was out of sight I noticed Emma straining her neck to try and catch a glance of what I was doing.

 

The children then had to queue up to go out and the noise level in the hall increased. Emma queued up and waited patiently to go out of the hall. Emma went and got her coat and was briefly on her own in the playground. She then joined up with her friends and ran around with them skipping and playing. She appeared to interact with her peers however her facial expressions appeared flat and appeared to be restricted.

 

I spoke to her class teacher who was doing the playground duty at the same time and the teacher reported that school have no concerns. However Emma is usually sensitive to noises as she would be tearful and distressed in assembly and they made provision for her not to attend assemblies. However they have noticed that Emma can be inconsistent with this in that she can participate fairly happily in a big group of kids (75 in number) dancing and singing. There is no evidence of distress or tears.

 

One of the teachers reported an incident where she was waiting outside the assembly, the teacher asked her to fetch a chair to seat herself and she had to repeat asking on few occasions before Emma complied. This happened on couple of other occasions when she reported that Emma would look back and not comply. It was clear that she had understood the instruction but appeared not to want to do it.

 

She has got a group of friends with whom she is close and will hold hands and interact. Emma seemed to be laughing and cheerful when with these friends. The class teacher reported that Emma seems comfortable with change and does not get distressed if there is any change of teaching staff or routine to the class. She participates in activity and is able to express excitement and pleasure. The teacher reported that they had taken the school out for a trip to a farm and Emma appeared comfortable with different textures, smells, noises and experience. She appeared happy and at ease and walked up to the teacher and told her that this was the best day ever.

 

In the school context there is no evidence of any repetitive worries or other repetitive behaviours. Emma gets a packed lunch on school trips and they notice her eating her food and there are no major concerns. The teacher is aware that Emma goes home for lunch and they are happy with this arrangement.

 

School are also aware that Emma's brother has got severe autism and needs a lot of input from his parents.

 

The teacher commented on Emma's imaginative play and stories which are vibrant and full of emotions and imagination.

 

From the school questionnaires, teacher report and my observation there does not seem to be clear cut symptoms of ASD and I will discuss this in my feedback appointment with parents."

 

With regards to Emma eating her lunch on school trips, if the school took the time to actually look to see what she has for lunch then maybe they would see the problem with her lack of eating. Whereas other children take sandwiches, yoghurts, etc etc, Emma would take a packet of crisps, a chocolate roll and a cheese sandwich (which by the way wasn't totally eaten as she won't eat sandwiches anymore).

 

When she is asked to do something at home and she doesn't totally understand what is being asked, then she will look at you with a blank look. This is genuine. Most times I have to rephrase the question or instruction, and sometimes speak a bit slower so she can understand. When they say that she won't do what they ask because she doesn't want to then I disagree.

 

Children with ASD can have good imagination. Her brother does. You should hear his stories when he's playing, so that doesn't prove anything.

 

At home she tends to line her toys up, she consistently walks up and down the room, won't sit still. She jumps up and down flapping her arms when excited. Not to the extreme that her brother does but she does, and she has always done that. She's not copying her brother. She constantly asks the same questions over and over again, doesn't seem to remember that she had asked it before therefore not remembering the previous answer.

 

I also think that the school is comparing her with her brother and seeing as Emma doesn't act anything like her brother in school, she obviously can't be on the same spectrum.

 

How should we proceed with this? Emma's next appointment is in November, may be later as the time they have offered us is not suitable so going to have to rearrange it.

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You could film the repetitive walking up and down and flapping that you see at home as well as the lining up of toys. That then becomes fact that she has repeitive behaviours.

 

You could get an independent Speech and Language assessment of her expressive and receptive speech skills, and also her social communication and play skills; theory of mind and imagination - these are all things a SALT can do.

 

Her not reacting when spoken to could be either not fully understanding; or not processing the sensory information. Does she ever appear deaf ie. you speak to her or call her name and get no response? Many children on the spectrum do this and usually have to have their hearing checked to make sure there is no physical problem.

 

You have said she has other sensory issues, so her not responding when spoken to could be part of a wider Sensory processing Disorder. Rather than her not complying.

 

When my son is focused on one thing he tends to screen out all other information. So if he is watching TV he may not hear me if I asked him a question. If he is concentrating on doing something he maybe able to tolerate a noise or smell or touch that I know he typically cannot tolerate because his sense of hearing, smell and touch is effectively "turned off". This is very typical of those on the spectrum, and the reason it happens is to try to limit sensory input to stop them becoming overwhelmed. It is not something they control, it just happens.

 

[i have an Auditory Processing Disorder and some Sensory Processing issues, and I often appear deaf. It drives my husband and the kids mad. But I just don't hear them. If they repeatedly call my name it is like I gradually start to hear their voices faintly in the distance, until I become aware that they are calling me and I tune into them. I am not on the autistic spectrum.]

 

An Occupational Therapist can assess your daughter for a Sensory Processing Disorder, and also for any other co-ordination problems. Children with a SPD typically function differently to the same sensory information. So one day they maybe okay with a certain level of noise, but not on another day. They may be consistently over or under sensitive to other things. That is why it is a Disorder. The processing of the sensory information is disordered, and they experience it and process it differently. That is all part of the Disorder. They are not consistently getting the same sensory information or consistently processing it effectively or consistently coping and integrating the same types and amount of sensory information.

 

There is also something called an Auditory Processing Disorder, again many on the spectrum can have this. This is where auditory information [including spoken language] may not be processed properly

 

My son has an autistic spectrum disorder, sensory processing disorder, auditory processing disorder, dyslexia, dyspraxia etc. So you can get a bunch of things together, not just ASD on its own. And most, if not everyone on the spectrum has sensory processing difficulties ranging from mild to severe.

 

The report is picking up on certain difficulties typical of being on the spectrum that they did not see your daughter had ie. okay social skills with the other kids, especially in the playground; okay co-ordination to the music and dance; not appearing upset by this change or the noise volume [although tolerance to noise volume can vary significantly - my son may make alot of noise and then run out the room when the vaccum cleaner is put on].

 

So I can only suggest the above.

 

Anxiety is also typical of being on the spectrum. But is this an Anxiety Disorder with Sensory processing Disorder or a speech disorder and if you combine those things at some point you fulfill the criteria for Aspergers as part of an ASD anway, because an ASD is about a group of difficulties that when presenting together are given this particular name ie. an ASD.

 

I know I was asking alot of questions around the time my son was diagnosed as to what the difference was between a child with SPD and a speech disorder and APD [who would therefore definately have problems with social interaction], as opposed to someone with an ASD and those disorders as well.

 

I think an experienced SALT should be able to use assessments to assess her speech and language and social communication and theory of mind [because theory of mind difficulties and problems with imagination are typical of an ASD]. And I agree that many on the spectrum can have imagination. My own son does. But his imagination tends to be limited to his areas of interest. But this is something a SALT could assess and report on.

 

That maybe the way to go to get answers. But it will cost money.

 

School are not going to have concerns unless she is not making academic progress or is causing disruption.

 

My son's former school never had any concerns even at age 10 when he could not read or write [due to dyslexia], when he refused to attend school for a year, and when he attempted suicide. I'm not sure what he would have needed to do to raise their concerns!].

 

It does sound like she is very capable [and part of that maybe by using copying tactics]. So she may have huge potential. But a SALT and OT assessment by a professional experienced in assessing children with Aspergers could help you gather more information. I think you could have those assessments carried out before your next appointment if needed.

 

If they are saying she has an Anxiety Disorder, what are they saying is the trigger for her anxiety?

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They aren't saying what is the trigger for her anxiety. In the letter it says that they are going to do a referral to see a Senior Occupational Therapist for therapeutic play. CAMHS have also spoken with Autism Outreach who are already supporting us with Matthew and they have agreed to support us with Emma and help normalise some of her behaviours.

 

When Emma plays she does tend to be quite babyish in her games, if you know what I mean. The doctor also mentioned this to me as we were just finishing our last appointment and was leaving.

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I've just got a few observations and queries as much of how you describe your daughter would also describe me as a child:

 

Does your daughter enjoy participating in drama and music sessions? If she does, she's probably quite at ease in this type of situation. This would mean that she would be more able to cope with things such as busy environments and noise even if those things can be more difficult or even aversive at other times. My son can have real difficulties in crowded places or if other children come close to him. However, if we go to a playbarn, his desire to play can often override this fear and accompanying sensory issues are also less evident, He, like me also loves music and participating in noisy musical activities. Whereas, loud noise can often upset him in a non-musical setting, I've seen him enthusiastically singing and clanging cymbals when he has participated in a musical activity. My son is diagnosed with High-functioning autism and goes to a special needs school.

 

I loved taking part in group-type activities which involved performing and playing the recorder and later, at Secondary School I loved being in the school choir. There is a lot of evidence that many autistic children enjoy music and this can even help them to learn social rules and improve their communication. I completely subscribe to this and encourage my son's musical interest - he is 4 and a half and can harmonise with ease - as I believe it has helped develop his speech and helps alleviate anxiety.

 

What kind of games does your daughter play with other children in the playground?

 

Often, people mistakenly believe that as my son is running about after and smiling and laughing at other children that there is no problem with his interaction with other children. Yes, these are lay people and if it wasn't for his speech disorder which completely impairs his ability to communicate (except for in a setting with non-verbal children where the 'lack' of verbal communication actually seems to mean 'better' communication strangely enough) then he may just appear as very enthusiastic (he laughs a lot and this can indicate, depending on the 'type' of laugh, raised anxiety levels) and maybe quite overly-sensitive (when he can no longer cope he can run off screaming or throw himself on the ground). A professional would be able to spot that the interaction was atypical but I question if it weren't for the speech disorder if this would be the case. There seems to be a mistaken belief that autistics 'shouldn't' have friends in order to qualify for a diagnosis. My son has friends because he enjoys certain children's company and he enjoys theirs but the 'quality' of the friendship is impaired. There are difficulties between the children because of 'inappropriate' behaviours and communication problems.

 

At primary school, I considered myself to have friends but I did not see my school friends outside of a school setting because they were 'school' friends and did not translate into 'home' friends. At school, I loved playing very 'active' games with other children such as 'What's the time Mr Wolf', skipping, rolling down a hill and gymnastic-type activities as gymnastics was a major obsession from age 5 until 11. When I was assessed, my mum said I was 'very good' at gymnastics. This was not strictly true because at age 10 I was 2 stages behind the rest of the girls even though I spent hours at a time alone, standing on my head in the garden (a repetitive activity) and dictated doing handstands repeatedly during playtime with classmates. For about 2 years I played a lot of the time with another girl doing 'hand-clapping' games. If I was not taking part in the activity I had no interest in it. I had no interest in dressing up and imaginary games. At home, I tended to play with my younger sister's friends (again active games) or I played with boys. I did try to do what other girls did however, if the occasion warranted it. A girl called Nicola used to visit her gran who lived in my street. She would invite me to play in her garden and I wanted her to like me so when she showed me her new 'Wendy House' I was in awe. I loved how the Wendy House looked (I've always loved architecture, lol) but I remember I was at a loss as to what I was meant to DO in it! I also spent many weekends with my dad fishing and absolutely loved this. This led to accusations that my father had an 'inappropriate' relationship with me by people who thought this was 'strange'.

 

How do your daughter's stories read?

 

Part of the criteria for diagnosis for ASD is impaired Social Imagination. However, this does not mean that a person with an ASD has no imagination; this is a different thing altogether. Again, I believe this ssumption that a person with ASD has no imagination is completely stereotypical and damaging. My son has imagination. He views things in alternative ways to other children and I believe ultimately this will be a huge strength.

 

There are people with ASD who are authors and artists, architects and engineers. These jobs require people to be visionary.

 

One thing I remember quite clearly from Primary School is when my teacher told me I had too many 'thens' in my stories. I loved writing stories and was considered very creative but my plots were written in a very 'sequential' or chronological way (I tend to speak in the same way), including minutiae of detail. My stories were often grounded in 'real' life along with my interest in history and time travel. It is also thought that girls with ASD may especially like fairytales and I can remember (certainly when younger) a few stories I wrote about witches and unicorns!

 

Also, it might be worth looking at 'how' your daughter writes. My writing style changed constantly and for a while my writing was at a very prominent slant. I was always watching how other girls wrote and copied their writing styles. This would have had the effect of annoying certain girls in the class.

 

Unfortunately, I don't think these things are taken particularly into account when considering ASD in girls but there are many ariticles online you can look at. There was an interesting 'list' of symptoms only pertaining to girls that Diane Holliday Willey wrote but unfortunately I can't find it...again, probably not widely referred to.

 

Some experts also think that girls only start to really struggle when social expectations increase towards the end of the 'childhood' years. Certainly this was the case for me. I consider my childhood to have been a good one even though I had problems at school but these were balanced out by the fact that I was able to 'detox' by spending a lot of time on my own at home, doing my own thing! The other girls began to ostracise me at the age of 11 and that's when the anxiety problems went into overdrive!

 

Good Luck in getting help for your daughter. Sorry can't be of more help.

 

Lynda :)

 

I really hope you canhte d elu al

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Matthew is just the same when it comes to hearing. If he is engrossed in something, either watching the tv or in the middle of a game, he doesn't tend to hear me and I could be there a while repeating his name over and over until he suddenly stops and turns to me. Sometimes I have to wait a couple of minutes until he answers me, so at first it appears that he hasn't heard me or is ignoring me, but he just has to have time to process the question or information I have given him.

 

I have problems with my hearing sometimes and I don't have a hearing problem. My ears tend to focus on the louder noise, so if I'm watching tv and, say my husband is eating a packet of crisps, I will have trouble hearing the tv because my ears can only hear the crisps crunching and the packet making a noise. It's very annoying and I end up telling him off!! Emma had her ears tested and there were no problems. Same with Matthew. He has sensitive hearing and loud noises tend to scare him, especially if he can't see where the noise is coming from. He still won't tolerate the vacuum cleaner, even the sight of it will send him into freaked out mode.

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Emma's stories usually are about princesses which is favourite subject. Sometimes she will write the story of one of her favourite dvds at the time. For example she rewrote the story of Shrek, but she didn't change the plot or anything. She wrote the story as she'd seen it on the dvd. She has an obsession with girls names and boys names and is constantly asking is so and so a girls name.

 

She likes to play games that involve her being a character off a tv programme that she likes. For example she will play the Winx Club, or Princesses, Shrek, just to name a few. She is happy to chase around after her friends. But they know how sensitive she is and sometimes, actually a lot of times, they will be mean to her and she will burst into tears. It makes her such an easy target for bullies and there is a girl at that school who does pick on her. Trouble is this particular girl can do no wrong in the eyes of the teachers and head teacher.

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Although I haven't read it, there is a book which I intend to buy which is all about the ways girls bully. It is called 'Friendship and Other Weapons' by Signe Whitson. The premise of it is that girls bully differently to boys and a lot of it centres around 'relational aggression', disguising bullying as friendship.

 

Perhaps at the moment, the main concern to concentrate on is keeping your daughter safe, especially from this girl you mention that the teachers like. Unfortunately, these types of girls have a good knack of ingratiating themselves on adults (the ones who go on to ingratiate themelves on employers etc in adults life).

 

Like you say, the examples you give of your daughter's quite 'young' behaviour will be noticeable to other girls. Development in a child with ASD will be noticeably behind their peers, in particular in their play behaviour.

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Also to me, rewriting stories from DVD's could almost be echoliac. Maybe I'm talking nonsense but it strikes me as similar to my son speaking aloud dialogue from his favourite programmes and DVDs.

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She has a few good friends but a lot of times they tend to be 'mean' to her and she gets upset and cries. I think certain friends do it on purpose because it is so easy to upset her and make her cry. She won't ever stick up for herself. Yes, she does have obsessions and she constantly talks about them whether you want to listen or not. She also asks the same questions about the same things , could be in the same day or the same week. She never had speech delay, in fact she was quite advanced for her age. She doesn't understand facial expressions and sometimes when you tell her to do something she tends to look blank at you and doesn't understand what she has to do and we have to rephrase the question or instructions. No she hasn't been tested for fragile x, and it doesn't look like they will because they say no she doesn't have ASD.

 

I'm the same as your daughter with the obsessions and I sometimes don't understand questions first time around. Confirmed diagnoses three years ago.

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I was going to ask you if alot of her play is based on things she has seen on TV. That is how my son is mainly. But he was completely like that when younger in primary school. And he would want other kids to join in, but they had to follow the storyline and script and he would almost direct them and would get very upset if the outcome as not as it should have been [ie. as on TV or on a DVD].

 

I also recognise what you are saying about your hearing problems. I am the same. In a crowded room my ears keep jumping from bits of conversation to another - whatever my ears home in on. That means I can just hear a mish-mash of words from different conversations around the room, and not be able to listen to the person who is stood opposite me talking to me.

 

I have never been able to hold a conversation in a nightclub or a noisy pub. I am bombarded by certain sounds and noise, and cannot screen them out, and cannot listen to things I want to listen to.

 

My advice remains the same. When you see the OT ask them to assess her for a Sensory Processing DIsorder. Keep a diary of events so that you can show any professional what you are concerned about over a period of time.

 

I would also use something like a digitial camera to film her [without her knowing] so that you can show professionals the repetitive behaviour.

 

And she also needs to be seen by a Speech and Language Therapist that has experience of assessing children with an ASD and a speech disorder.

 

The problem with assuming that a child is playing with another one is that you have to be right up next to them to hear what they are saying. They said my son was 'playing' with other kids, when I knew he would be doing something from TV, or maybe telling them his phone number etc. He does want to join in and play, but he does not know how to do it. And then there can be other times when he prefers to be on his own.

 

At his new school they are teaching him alot of social skills, which I am seeing him use at home and also out and about in the community. But an example of his poor social understanding is that we were at the supermarket and had loaded all our things onto the payout conveyor belt. The family behind us also had a boy, and he had bought a toy. My son went and picked it up and tried to talk to the child about it. He was being fiendly. But he did not see any problem with picking up someone elses shopping from their trolley. He is 11 now, so a typical 11 year old would not have just helped themselves.

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