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Private Assessment of my daughter: still left with questions

Handywoman

Will try and keep this brief (but will no doubt fail):

My 8 year old daughter has cause me concern since she was about 15months old. By age 4 her language was severely delayed and disordered. I engaged a private SALT and worked intensively with SALT and saw extremely good results and a lot of language development (including better attention and eye contact). Fast forward to now and school are recognizing anxiety when under pressure, hypersensitive to noise and demanding silence in class (yeah right!) slow progress in literacy and numeracy (poor reading comprehension despite good decoding) poor attention, slow output (despite adequate fine motor skills and extremely neat handwriting but strangely with no spaces between the words) and failure to finish work. She now has an IEP, ear defenders, help with literacy, social skills classes, visual plans. At home we have had severe meltdowns and very difficult/extreme behaviour, phases of constant unhappiness, difficulties with social skills, apears very rude to us and has difficulties with the unwritten social rules around playdates etc. sensory issues (extreme aversion to 'scratchy materials' and never wears socks in the house). She can be very anxious when asked to do homework, and often this is impossible. She can also meltdown at seemingly nothing, losing control, shaking, bloodshot eyes, screaming at the top of her voice, often this seems irrational and happens despite being given clear instructions, choices and consequences. Her language was recently re-assessed by the same SALT and her structural grasp of language was found to be age-appropriate but understanding of non-literal language and conversational skills markedly different on 1st centile. SALT suggested Aspergers. Sick of waiting around for NHS (still waiting for ADOS) I decided to have a private assessment carried out. The assessor did ADOS/ADI-R and observed in school at lunchtime (anxious) and at after school club (repetitve overtures to other children, didn't recognize when others were not interested, just carried on talking and repeated over and over with other children). The outcome of the assessment was that my daughter has 'significant' impairments which affect her in each area of the diagnostic criteria on an 'everyday' level, yet are not severe enough for a diagnosis. He noted her lack of gesture, lack of acknowledgement and interest in him, inconsistent interpretation of non verbal language, mild sensory issues, rituals, inflexible thinking, difficulties with social rules and very literal interpretation of written language. Yet because they are not 'severe' she needs help as per Aspergers kids but does not merit a diagnosis.

I was very impressed with this man but I wish he could have come on holiday with us and seen how many insurmountable difficulties she encountered from hot sand to new environment to suddenly deciding to not take turns at something. She is 8 years old and has just started Y4. We just watched the end of Casualty and there was about to be a car accident so the channel got changed and my daughter complained, saying she liked watching 'the travel news'. Am I right to question this non-diagnosis?

  • Oh IW I really hope you get the recognition you need, too - good luck!

  • I'm so relieved for you.  It's positive news and pleased there was anything I did to help.  Wish me luck too.  My eldest is going for reassessment in a month and we have a cognitive appointment (3 hours long) on Monday before the ASC bit.  She has been so failed by services already, she is in such a state and for the first time last night, I recorded a part of her meltdown as evidence.

  • So I needn't have worried so much, I arrived at the MDT appointment yesterday and was told by the Paed straight away that a diagnosis of ASD was going to be given. My daughter did ADOS with and SLT, had an in-school observation on Monday by SLT and we did 3di, SENCO sat in and contributed from school's point of view. The 3di was unequivocal and Paed was emphatic about her diagnosis and said she would have diagnosed even without solid results from 3di/ADOS. Actually the ADOS was not that conclusive, SLT seemed to get more out of observing than scoring it IYSWIM. I expected to fight on the day was straight away offered the recognition, understanding and validation for my girlie that I've been seeking for so long. I am so happy and relieved after all this time. She's been referred to Autism Outreach. Thanks to Intenseworld and Crystal12 for replying and giving me support, it really gave me a boost! 

  • Just wanted to say thank you again to you guys for these fab replies. We have been offered a diagnostic assessment next week so I'm very nervous but thinking, thinking, thinking about everything said here. Here's hoping we get a diagnosis and can get off this merry-go-round...... more soon...  

  • My youngest daughter got her diagnosis aged 7, before she had her diagnosis, I told her that I believed she had autism anyway.  The reason for this was that she was becoming negative about herself and it broke my heart, I wanted her to know that it wasn't her fault (although I emphasised that it wasn't an excuse for bad behaviour!) that she became overwhelmed and had meltdowns.  I wanted her to know she wasn't a bad person as she told me she was and told me she should be dead.  When she had her assessment, the clinicians told me not to tell her about her diagnosis.  I told them I already had.  Their eyes widened and they looked at me as if I had made a boo-boo.

    As I have Asperger's myself, I know that not knowing why you are the way you are is far more detrimental than knowing you have a label.  It helps you make sense of it.

    Maybe you could talk to your daughter and say she has some traits of the condition, if you don't feel comfortable telling her she actually has it.  You could tell her it makes her special, and have lots of amazing qualities and gifts, but also some things are extra difficult for her and make her explode.

    My daughter has threatened to cut me and kill me many times, as well as herself (she's also 8yo), and a few times I've had to hide all the cutlery and scissors up high just in case.

    Don't let what some bumbling clinician has done affect your relationship with your daughter, follow your instincts on how to talk to her.  Be led by her by asking a couple of probing questions and gauge how much information she can handle.  She will have some awareness of being different and struggling with who she is at that age.

    I don't think you made a mistake sending the private report to the CDC, it's all information that helps form the larger picture.  Perhaps when you see them though, make it very clear that you feel he should have diagnosed her and she has all the hallmarks of Asperger's.   Really emphasis her history.  When I referred my children I typed up 20+ page life reports on them as evidence each.

    If things don't pan out at the CDC diagnosis-wise, you can still ask your GP for a 2nd opinion at another clinic.  So all will not be lost.  It will just be horribly stressful for you to go through.

    Don't lose heart, it is very difficult, meltdowns are a reaction to something.  Sometimes there is no specific trigger, just existential stress that needs releasing periodically.  Just ensure she has a time out space (bedroom or wherever) that she can retreat when she feels overhwhelmed, that is a calming place maybe with some sensory toys.  Explain to her that sending her to her bedroom is not wasting her time, as she can use that valuable time to feel better/calmer and also read, do homework or listen to some nice music.

  • Thanks you for these helpful replies. The above resources were extremely interesting. I regret not pushing these points after the private assessment, yes, she has had an extremely supportive environment at home, including lots of intensive, skilled SALT input and huge amounts of time, love and acceptance of those things she just can't do/understand. The private assessment notes the huge amount of improvement over the past four years, yet some of her behaviours are certainly extreme: her meltdowns, the fact that she can turn into The Exorcist and over the summer she attempted to cut my skin with huge, sharp, kitchen scissors then blamed me for sending her up to her room and 'wasting her time' (a phrase she uses a lot to deflect things). The assessor claimed he is very aware of the subtle presentation of ASD in girls (this was why I engaged him) his report even says my daughter could potentially get worse. I feel I've been left high and dry by this assessment. We've had two referrals to CDC in four years, am hopeful for NHS ADOS in December/January (18month wait). I'm afraid I did send CDC the report from the private assessment because it lists so many differences and difficulties. If we finish up with no diagnosis from CDC I think I may totally lose the plot because I know we will end up starting the whole charade again in Y7 with CAMHS. I can't bear that. I cannot talk to my daughter about her struggles because she feels there's nothing wrong with her. So I feel frustrated and alone with it all, it's like watchin a car crash in über slow motion. 

  • I agree.  He should have diagnosed her.  It's all the more annoying as you paid for the assessment.  So many clinicians are not aware of the sometimes more subtle presentation in females on the spectrum.  This is rubbish "not severe enough for a diagnosis".  She clearly has Asperger's.

    Don't rely too much on the ADOS (or CAMHS as many areas have a crap CAMHS service).  CAMHS failed to diagnose my 12yo using this and I researched and found it's only 77% reliable in high-functioning people as it was researched on prototypical (classic) autism cases.  I have read the DISCO is more in-depth, and no assessment should be treated like a tick-box exercise anyway.  She may need to see someone in a specialist autism assessment centre.  The NAS has the Lorna Wing Centre, and there is the Maudsley's Newcomen Centre.  You could ask your GP for a referral to such a centre.  In the meantime, I think you should write to the assessor with this information, saying you believe he should have diagnosed her and can he look again at her case:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864898/ (study on the unreliability of ADOS-2)

    http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx (relevant to females on the spectrum and how assessment shouldn't be a tick-box exercise)

    According to NHS NICE Guidelines (which would be best practice for a private one), the following are rules that clinicians must follow:

    http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

    1.2.2 Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others.

    1.2.4 To help identify the signs and symptoms of possible autism, use tables 1–3 (see appendix C). Do not rule out autism if the exact features described in the tables are not evident; they should be used for guidance, but do not include all possible manifestations of autism.
     
    1.2.5 When considering the possibility of autism, be aware that: signs and symptoms should be seen in the context of the child’s or young person’s overall development

    • signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals

    • when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment

    • autism may be missed in children or young people who are verbally able

    • autism may be under-diagnosed in girls


    1.2.7 Do not rule out autism because of:

    • good eye contact, smiling and showing affection to family members

    • reported pretend play or normal language milestones

    • difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

    • a previous assessment that concluded that there was no autism, if new information becomes available.
    1.4.4 When deciding whether to carry out an autism diagnostic assessment, take account of the following (unless the child is under 3 years and has regression in language or social skills – see recommendation 1.4.2):

    • the severity and duration of the signs and/or symptoms

    • the extent to which the signs and/or symptoms are present across different settings (for example, home and school)

    • the impact of the signs and/or symptoms on the child or young person and on their family or carer

    • the level of parental or carer concern, and if appropriate the concerns of the child or young person

  • Hi - I think you're right to question the non-diagnosis.  How long do you have to wait for ADOS?  You may already be doing this, but I'd be pestering and pestering them to speed things up, verbally + also by writing.  I'm not sure whether I'd mention the private assessment at all as it may influence them so they don't hurry up at all!  If you daughter would be ok about it, I think I'd video her behaviour + keep a diary, so when you finally do start the process you can show those involved how she is at home with her meltdowns etc.  She clearly is unhappy at school, despite the measures in place so will let all that stress out when she gets home.  Girls can present a bit differently to boys when it comes to autism so that's where things might have gone awry if the person who assessed her wasn't fully aware of that.  The home page is useful if you haven't checked it out already.  Smile