Help with non-diagnosis of Aspergers for 11 year old daughter

[lisa1970]

Hi there. I am hoping someone can help with a query about my daughter. Sorry this is so long, but wanted to give a full picture.

 

Instigated by the school at age 6 we went for an ADHD assessment. They said she didn’t have it and recommended an ASC assessment - we never received an appointment. Aged 10 her Year 6 primary teacher said she thought she had "inattentive ADHD" and recommended we went for assessment. After seeing a paediatrician, information from the school and a Connors questionnaire we were referred to CAMHS.

 

CAMHS do a consultation clinic where they first see if you are right for assessment. Our first appointment was four months following the referral in the consultation clinic. Three appointments later the CAMHS practitioner referred us for an assessment. That was in April and the actual assessment was 6 months later in October 2012. Followed by some psychometric tests. I have only just been given the feedback, another five months later. The report they sent me even had the wrong name in four sections! The psychometric tests were not included in the report, that was separate, and they had made their decision based on the assessment day in October.

 

They say that she does not warrant a diagnosis. That’s it, goodbye. No plan of action, no further help, nothing.

 

The assessment only had a clinical psychologist and speech and language therapist in the room with my child. We were in a separate room with another psychologist answering the questions they ask. They did not carry out a school observation or contact high school for information. No OT or specific SLT report was carried out.

 

They said she does not have a diagnosis as she did well in the individual assessment. Although the primary school report had backed up everything I said, and said even more, they said that is discounted as she was okay on the individual assessment. I did point out that obviously with 1:1 attention in a calm, quiet room she would do better, but life isn't lived like that!

 

From everything I have read I think she has aspergers. She fits the profile. I have also read that the diagnostic criteria they use is often too much based on a boys profile, which is different from a girls. They used ICD10 for this assessment.

 

I have another child who is attaining his school levels, has friends, doesn’t display the same behaviours etc, so I would say it wasn’t my parenting skills that were the issue.

 

Does this sound correct to you in your experience of getting assessed? Many thanks for any thoughts/ideas on this, or your experiences/opinion. I am thinking that I should ask for reassessment? Do any of you think she does sound to have problems in the ASC category or am I totally thinking incorrectly?

 

My daughter presents with the following problems (these are just some of them):

 

* Special interest in dogs and everything dog related. Constantly asks for me to buy a dog - but will not touch, stroke, even hold the lead for a real dog.

* Special interest in health and safety - creates posters and talks for the family. Asked for a meeting to go over a fire escape plan she had created.

* Had friends in primary school, mostly from the year below. Entered high school and has made no friends. Sits alone at lunch and breaks. Previous friends no longer seem interested in visiting.

* Problems with self care (only just started brushing her own hair, can't put in a bobble), has to be forced to wash and brush teeth.

* Constipation problems - doesn’t seem to have time or forgets to go to toilet, or take medication unless I prompt her

* Forgets homework, forgets what she is telling you sometimes half way through a conversation

* Attended activity for three years once a week and didn’t know the name of any children there

* No eye contact with anyone, even parents, or even on computer on Skype to grandparents will look down

* Attention problems - described by teacher as in a world of her own

* Still wants to play with babyish toys and to run and skip around

* Learning difficulties - despite average IQ has been found to be working four years behind peers in reading and spelling. Also behind in maths. Only topic that excels in is ICT.

* Never bothers calling for friends. Likes it if people call for her but won't think to make first contact, or will ask if she can and then forget.

* Immature

* Fear of being "a teenager" since she was about 9. Still scared to grow up.

* Believes in the tooth fairy, even though I told her it wasn’t real (on entering high school). Believes in Santa and the Easter bunny.

* Will fix a funny smile on her face sometimes. Rarely will say anything is wrong with her.

* Doesn’t understand sarcasm. Quite often has to have saying explained to her.

* No interest in fashion, make up, hair. Will throw on any clothes, ones that don’t match, hair unbrushed, teeth unbrushed and want to go out.

* Eats with fingers. Will shell each garden pea on plate and split in two before eating. Makes food into parcels.

 

Primary school reported that:

*Over imaginative and 'in her own little world', quite frequently talking to herself and making other strange noises.

* In assemblies noted some bizarre behaviours for a child of her age

* Inattentiveness is the biggest problem, followed by an immaturity not matched by her peers

* Likes to share drawings at inappropriate times

* Very excitable about things she has done but cannot talk about things learned in lessons

* Fiddling in class, not listening or looking up

* Gets excitable and jumps up and down waving arms which is noticeable

* Starts a conversation and then peters off becoming inaudible unless prompted

* Playground friends are few, quite frequently on her own playing out a situation

* Cuts in on conversations and talks aloud in class/assembly

* Throwing and catching a ball uncoordinated

* Writing gets larger with less conversation

* Imaginative play interferes with listening and learning

* Very worried at a change in routine, e.g. new class

* Struggles even on 1:1 basis

* Often out of seat and moving around classroom

* Always has hold of a comfort object

* Tendency to become "fixated" on certain objects resulting in her seeming in a "dream world"

* Stroking hair, staring at objects because "they're so beautiful" and stroking a feather for extended periods of time

[smileyK]

She does sound like she got a lot 'issues' difficulties in the ASC area pointing in that direction I would assist to have her re-assessed as sounds like professionals at CAMHS at early age in her childhood has been clearly focusing their attention/efforts on ADHD yet concentration and attention -lack of can also be AS related too lot of what you have bullet pointed listed on here is 'classic main type ASC symptoms' what be known as AS (even though term diagnostically 'scrapped'!) Your daughter could have ADHD aswell as 'other linked /connected spectrum conditions' such as ASC or could just have ADHD traits along with ASC but ASC sounds likelyhood present in some form! You know daughter best so ask for 2nd opinion it's your daughter 'n' your right too! Has dyspraxia been looked into at all?! As she coming up to time in her life - puberty and hormones physcial/emotional changes where she'll need consistency and stability so 'answers' need to be there -settled and calm for her to accept and understand where needed I was officially assessed and diagnosed during my early teens too (14 years old!) Only discovered through mental health issues (depression/anxiety) so can personally relate to your daughter's situation! XKLX

[lisa1970]

Many thanks for your advice. I am just drafting up a complaint letter asking for reassessment. I found out that they havent followed NICE Guidelines either, so thinking of pointing that out too. I feel there is just TOO much for it to be dismissed.

 

Dyspraxia, etc. not looked into. The attitude was .. nothing is wrong as she was fine on the 1:1 assessment, good bye. x

Edited March 16, 2013 by lisa1970

[bed32]

Have you seen the results of the individual tests? If not I would get a copy of those and see if that gives you more information - I would certainly try that before just making a general "complaint" as you may be able to challenge the assessment in a more specific way.

 

The diagnostic criteria for ASD are quite formal. It may be that she does not meet the necessarily level of impairment - for example from your description she may not be sufficiently impaired in the area of imagination - "over imaginative" is not normal in an ASD child.

 

I am not sure what you wish to achieve from getting a clinical diagnosis - it is not always particularly useful in understanding the needs of a child as there is no such thing as a typical ASD child. Your daughter clearly has issues that ought to be addressed and that can be done without a clinical diagnosis. You might consider getting independent tests by an EP or SALT, or seek assessment by the LA EP. If she is not achieving in school near the level of her IQ then you could consider applying for statutory assessment and put the onus on the LA to explain the difficulties she is having.

[smileyK]

@ lisa - I do feel 'official diagmosis' is important factor of moving on and accessing services and support even educational basis! Good luck on your complaint I think you're right in your decision! I would look into dyspraxia further as struggling to throw/catch ball hand eye co-ordination affected fine/gross motor skills too etc??? X

[lisa1970]

bed32 - the reason for wanting an official diagnosis is firstly to access services and help. As I said, because she hasnt been given one therefore there is no help offered, it is just goodbye. I have requested a statutory assessment and that the school ask the educational psychologist to review her. Another reason I would have liked some sort of 'label' for her difficulties was to help explain her problems to her. To be able to say you're having these difficulties because.... I thought that would have been useful to her in dealing with things like her friends no longer wanting to visit, that she is not achieving the same as everyone else in school, that she finds it difficult in noisy situations, etc. I dont know whether that would actually help her but had assumed it would, as she would be able to think to herself, and perhaps when older even explain to others, I am the way I am because....

[Lyndalou]

bed32 - the reason for wanting an official diagnosis is firstly to access services and help. As I said, because she hasnt been given one therefore there is no help offered, it is just goodbye. I have requested a statutory assessment and that the school ask the educational psychologist to review her. Another reason I would have liked some sort of 'label' for her difficulties was to help explain her problems to her. To be able to say you're having these difficulties because.... I thought that would have been useful to her in dealing with things like her friends no longer wanting to visit, that she is not achieving the same as everyone else in school, that she finds it difficult in noisy situations, etc. I dont know whether that would actually help her but had assumed it would, as she would be able to think to herself, and perhaps when older even explain to others, I am the way I am because....

I wish I could say that there is an easy answer to your question but I know and you probably know that it can be a lot more difficult to gain an ASD diagnosis for a girl as opposed to a boy. There are professionals who recognise that girls often 'present' differently to boys with more 'subtle' symptoms but many professionals/teachers equate this to there not being much of a problem when it actual fact all it means is that the problems are not always outwardly manifested and even if they are they are not taken particularly seriously. Also, it is generally believed that girls can tend to start struggling more obviously at the onset of puberty. Speaking as a woman who struggled all through my teens (and didn't tell anyone apart from God), I would say trust your instincts that your little girl needs the help you describe. Half the battle is that you see the problems she is having. My mum laughed when I plucked all my eyelashes out at the age of 12 as I was in so much distress!

 

There is a lot of anecdotal evidence to suggest that many girls with ASD actually have a very active (in fact completely vivid) imagination because it is their way of escaping the emotional and social turmoil they face. However, it is not officially recognised in any diagnostic criteria and this is partly why the diagnostic criteria is currently under scrutiny with regards to how applicable it is to girls (see under Girls and Women on the NAS website) and there is a lot of debate as to how many girls the diagnostic criteria excludes unfairly.

 

I would suggest that you would only concentrate therefore on the problems your daughter has which would be observable in both boys and girls on the spectrum and from the list you have produced I would say there are a fair number. I would concentrate on demonstrating your daughter's lack of SOCIAL imagination rather than highlighting her fantasy life and provide evidence as to how she struggles with friendships and with specific areas of academic learning.

 

Lynda

Edited March 16, 2013 by Lyndalou

[bed32]

To be honest in our case the diagnosis did very little - CAMHS have been totally useless. What has been most use have been the EP and SALT. The diagnosis was about a 30-45 minute "test" that was almost ludicrously bad. The EP and the SALT are much more about how he functions in the real world, combining school observations and a selection of tests to investigate particular parts of his behaviour.

 

I think you should now concentrate on the statutory assessment process. Get the SEN Code of Practice and read the relevant sections that explain what they should be looking for, then write your parental comments to bring out as many of those areas as possible. The fact that she appears to be behind her cognative level should be enough to get statutory assessment on its own - you should put as much in as you can about achievement and IQ

[Sally44]

Your daughter seems to have a number of sensory issues, and may have a Sensory processing Disorder, which often goes hand in hand with an ASD.

 

Rather than going to CAHMS, what about if you speak to the Speech and Language Therapy Department at your childrens hospital and ask them if they cover your area and if you could get a referal to them from your GP. You need her to be seen by a speech therapist that has experience of assessing both children with ASD and Language Disorders, you would want them to carry out "standardised assessments" of her receptive and expressive speech, as well as her emotional literacy and social communication.

 

Your daughter may also have Prosopoagnosia [face blindness], or may focus through mainly one sense at a time and be 'unaware' of people in the environment, or even the environment itself. My son can be like that. He finds it very hard to recognise people, especially if out of context, and it takes him years, and sometimes he never learns a person's name.

 

And as Bed32 has said, requesting a statutory assessment towards a Statement would involve the LA seeking advice from the SALT and EP. But what stage of SEN is she at now in school. Does she have IEPs? Has the school asked the SALT or EP to see and assess her? A Statutory Assessment would trigger their involvement. You can start the ball rolling. And the LA will ask school for a report too, so they can put in everything they have told you.

[lilbec]

Hey lisa hang in there and don't give up! Pester people. I sat back for too long and listened to people tell me what a naughty boy my son was when it was obvious to me that he wasn't naughty but was not coping. He was bullied for years and it was his fault because he "did not learn not to retaliate" when someone did or said something nasty to him. I just did not understand exactly why and was beaten down by years of struggle at home and with the school. But the length of time taken for assessments etc is ridiculous and the more we as parents get out there and complain the more it will be seen that CAMHS needs more specialist support and training. And bed32 how did they arrive at a diagnosis after a 30-45min "test"? My understanding is that the formal diagnosis is arrived at by using a questionnaire that lasts more like 2 hours as well as observing the child and any medical and/or school reports available. It certainly was in our case. Unfortunately I also found that when you ask for a specific assessment they will look only at that. So you will have to pester to keep them looking at different things to give you a "label" to use for explanation for your daughter. And don't be afraid to say to them that you need to tell her something.

 

Personally I agree that being "over-imaginative" should not exclude her from being ASD. We don't always know what they are imagining. My son has a very vivid imagination which can be quite unrealistic socially. It can be very good escapism when life is a struggle.

 

And I agree that it isn't necessarily the "doctors" you need to see to get the right help. I am a GP and, although had some vague suspicions regarding ASD and my son from a young age, was uneducated enough in that area that I discounted them for quite awhile. We also went the route of ADHD although I wasn't convinced, and were told no and nothing further was done. I pestered for years for dyslexia assessments and was told he did not have it until I went privately and had a more complete assessment and told actually yes he did. But of course I again had to pursue the next diagnosis when I realized that was not the complete answer.

 

So don't give up. If you feel you are waiting too long or not getting enough feedback regarding assessment etc, contact someone and ask. Repeatedly. If the referral is through the SENCo at school, pester them and the person you were referred to. If the referral is through your GP find out who it is to and if that is the appropriate department and if you are waiting too long then contact PALS (patient liaison service)and tell them about it then keep phoning and talking and pestering. We asked for a referral specifically for ASD assessment. It took 7 months before it was done. When I hadn't heard anything after the first 3 weeks from referral I started phoning around to find out why. School holidays slowed things down but mostly people's lack of initiative. Eg. one department a few months down the line had done nothing because they did not have a contact detail for the SENCo at the school. They knew the school name, the child's name and were in the same town but lacked the initiative to pick up the phone to call the school to get the SENCo name or to use the computer to get it. So I gave it along with a bit of a push. Remind people you are there and need attention. As a part-time GP I actually appreciate this because it can be so easy to get caught up in the day-to-day grind and think someone is sorted out when they are not.

 

Like the others will tell you, get a file going with ALL the paperwork in it regarding school reports, assessments-complete reports, any discussions you have with teachers etc. It will all paint a picture and help those assessing your dqughter's needs as well as helping you to remember things from years earlier when asked them during an assessment.

 

And keep trying. Can't say it enough. Don't give up. There are lots of us out here to back you up and support you. Listen to what advice people can give you, choose what YOU can use and set aside the rest. Someone else will find it useful. You are not alone.

[cmuir]

Hi

 

I sympathise. The diagnostic process can be such a long one mainly because, if it's done properly (no one wants to label a child with a condition unless they have it, and even then ...), involves a number of professionals e.g. SALT, OT, Psychologist, etc. In my son's case, we were passed from pillar to post – after 19 reports and being no further forward, I ended up snapping and insisting on answers and demanded a referral with proper assessments. School should be assistant as well as the Ed Psych by providing reports on presentation in a number of areas (they aren't qualified to diagnose, and nor should they, but they should know what's within the 'normal' range academically and socially). My son had an ADOS. It was filmed and a specialist paed (a Professor whose specialism is neurodisability/autism) and a SALT carried out a number of tests. It's designed to look at eye contact, reciprocal language skills, understanding, behaviours, etc. No diagnosis should be based upon one visit, but rather, if appropriate, a child should be seen in a number of settings (not just at home or in school). In my experience, post diagnosis, my son was referred to CAMHS, we were through a few – some didn't have a clue what they were doing and frankly we went round in circles. Because I kept a diary (perfectly sensible I thought) detailing my sons' behaviours, I was told this was a very negative thing to do – needless to say I was livid. Told that person that one doesn't go to their GP to tell them how great they feel, but rather report all issues with a view to a diagnosis. Recording things in a diary was the only way I could accurately keep track of things. We moved onto someone else! Sometimes, it takes time to find the right people. Some are insistent that a child has to tick every box, but my son isn't classic - it took a few years before we saw a professional that 'got him'.

 

Be strong, be persistent, ask for an ADOS (via GP and carried out by Paediatrician/local hospital's communication clinic), keep a record, and keep your chin up!

Edited April 8, 2013 by cmuir