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Made to feel like I have lied!:(

tbag

My daughter was diagnosed with autism this summer aged 11. She started high school, became suicidal and so only attended 8 times. I have managed to get funding for home schooling on medical grounds and she is under assessment for a statement to hopefully get her a place at a special school. As part of this assessment my daughter had a home visit from an educational psychologist. She said my daughter was very immature and vulnerable. She said she needed to be taught what is socially acceptable behaviour for her age etc. Then she spoke to the secondary school and the primary school. The secondary school said she was 'comfortable and happy there'. The primary school said she showed no signs of autism there! She has a formal diagnosis and definatly did show signs of autism in both schools. She is passive and well behaved at school but has never made friends. The schools have blatently lied and said she did not require extra support, even though they supported her but did not document it! Her primary school missed all the signs and did not support me in trying to get a diagnosis,they let her down. I feel like they are still doing that. I'm so frustrated and upset. The educational psychologist phoned me the day after her visit and told me what the schools have said. She said it is her recommendations that matter most in her report and my daughter is obviously autistic and unaware of social cues and expectations and behaves like a 7 year old! After finally getting a diagnosis I thought I could put the schools negativity behind us but I feel now, they are still able to negativly impact on my child. Why are they doing it! I feel like a mad woman!

  • Knowledge about autism is just not getting through to where it needs to.  Even clinicians are struggling to recognise all the presentations of autism, they seem flummoxed by it being a spectrum and fear diagnosing even though not all features (according to diagnostic criteria) need to be present to diagnose.  They have no idea about the NICE Guidelines, no idea about the Autism Act/Autism Strategy and no idea about the latest research and knowledge on autism.

    When is it going to get through?  Who is going to take responsibility to educate them?

  • It is sad that we see this so much in here. The quality of "professionalism" where autism is concerned is often disappointing at best.

    It is hard to comprehend why no-one seems to feel any obligation to demonstrate recognisable professionalism.

    Criticising you for minor interpretations of things like mentioning your daughter's lack of friends in front of her, when obviously this "professional" is getting more important things wrong, merely demonstrates poor professionalism - passing the blame onto the parent when there is no rational justification.

    It is a pity we haven't the lobbying power to demand higher standards. 

  • Absolutely!  It's about time these people were made to listen. Fobbing parents off the way they do is not on.  I know there are stretched resources, but that's down to the government to sort out.  It's not our fault they fritter money away on the wrong things and don't leave enough for special needs.

    I've had that sort of rubbish from them as well about you shouldn't say things in front of them.  Why not?  You are there to resolve the situation and hiding from the truth isn't going to help that.  Families have the right to be open about problems and discuss what to do with each other, this isn't Victorian times and your daughter could potentially have extreme emotional distress if she felt her own family did not recognise her problems.  You are only reporting what your daughter has said!

    What a poor darling.  She has a lot in common with my 12yo.

    PS I have an autism FB page, it's got lots of info on: www.facebook.com/PlanetOughtism

  • Thank you so much, this is really helpful and although I am going to read all your links later your post has really made me feel better and less like I'm going mad. My mum says I should print it and send it to them! Would this be OK?

    The EP also said that I had said twice in front of my daughter that my daughter has no friends. She said I shouldn't say this in front of her! But she asked about difficulties and this is one of them! She made me feel terrible.

    My daughter told the EP that she was in a red  balloon all day at school, it got bigger and bigger all day and popped when she got home! Her own words said directly to the EP!

  • This makes me sooooo mad.  I am in a similar position with my 12yo daughter.

    Firstly, they clearly do not understand this:

    http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx

    Or this: http://www.autism.org.uk/About-autism/Autism-and-Asperger-syndrome-an-introduction/Gender-and-autism/Women-and-girls-on-the-autism-spectrum.aspx

    Dr Lorna Wing (affiliated with the NAS) has described subtypes of autism:

    1. Active-but-odd
    2. Aloof
    3. Passive
    4. Stilted/formal

    http://www.awares.org/static_docs/about_autism.asp?docSection=3

    http://link.springer.com/article/10.1007%2FBF02172210#page-1

    Here are some descriptions of the passive subtype:

    Passive Presentation of AS
    "Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenability is an advantage in work, and they are reliable, but sometimes their passivity and naivete can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork."

    Passive Presentation Asperger's
    -passively accepts social approaches as long as the other person initiates and keeps it going
    -may enjoy social contact but does not initiate it or seek it out
    -may or may not make eye contact
    -social approaches from people are tolerated as long as they're not sudden/unexpected or intrusive/disruptive
    -quiet, easy going, can engage in activities led by others

    Often females with autism/Asperger's are quiet and anxious and less likely than boys to show any signs in school.  Boys tend to be more aggressive.

    Your daughter is reacting strongly to school, and schools seem to have a lot of trouble accepting this because they don't see it at school.  However, schools lie too.  I have been witness to this with both my daughters.  They paint a rosy picture for parents and accuse the child of either lying or misunderstanding when they report problems to parents.  Or their other tactic is making the parent appear to be a vexatious complainant aka troublemaker.

    All the schools care about is that the child is not underperforming academically and is not disrupting their classes.  They will ignore everything else.

    This leaves many parents in a desperate situation with their child, who is suicidal, self-harming, depressed, regressingin behaviour etc.  And it's convenient for them to blame it on the parents because they don't see it at school.

    Many autistic children (and adults) have trouble speaking up and asking for help, are easily inhibited by their environment (thinking they are "not allowed" to speak up) and also have trouble identifying what it is that is wrong too.

    You will be interested in this:


    My question: "when children on the spectrum hold in their anxiety at school and the school don't recognise their issues are because of failure to cope in school, what would you recommend? Some children cannot speak up to ask for help or even have trouble identifying their problems due to alexithymia, so the parent has to be their voice, but schools don't listen."

    Phoebe Caldwell: 
    "Unfortunately this is an all too common problem, with quite a number of children on the spectrum growing up angry at the failure of schools to recognise the difficulties they are struggling with. They feel they are in a hostile environment and have no way of asking for help. And tragically, many schools still have staff and support workers who have absolutely no idea what autism involves in the way of sensory and emotional distress. To some extent it is the Training Colleges that have failed to keep up with what we are now learning about autism, but many of the teachers were trained before such information was available. And some training colleges are still graduating students without the specialist training they will all need when they have children on the spectrum in their class. I am aware that this is a reason but not an excuse.

    We must address the sensory issues first, asking ourselves, is the child hypersensitive to sound or light, do they have balance problems, are they hyposensitive to proprioception? These are physical problems that can be addressed but are often not. And they have behavioural consequences which can make the child 'awkward' in the eyes of a teacher who does not understand the sensory distress they cause.
    But this do not take into account the hidden damage that is done by emotional bullying, especially through sarcasm and humiliation. The idea that children on the spectrum do not feel is completely erroneous.

    At present all we can do is keep on lobbying, join forces with other parents, put pressure on the governers and education authorities, etc. Undoubtedly one will collect a reputation for being an 'awkward' parent on the way but we need to put pressure on the schools for better training."
    The unbelievable comment by the EP saying your daughter was immature shows outright that they do not understand autism at all.  EPs are not expert in autism.  Most, if not all, autistic people are behind by around 3-4 years emotionally.  (I am on the spectrum myself BTW) so although we do learn what peers learn, it comes later.  And it cannot be forced.  This EP sorely needs educating.  Precisely because your daughter is vulnerable is why she needs the right support!
    Putting someone with autism into the wrong environment is very traumatic for them.  Schools do lie, and because the LA is basically their master they will take orders from the LA as to avoiding supporting statements where they can.  Your daughter is not disrupting their lessons or falling well below in her learning so they are happy to ignore her human distress.  Her emotional and mental wellbeing is at stake and this is a very strong reason to have a statement as they are not only about the academic side.
    They are wrong in saying that it is the EPs input that matters most, so if you haven't already sent your report in, get advice from www.ipsea.org.uk as they can help you with what you write.  Parental information is as valid and important (in many ways more so) as the advice from other agencies.
    Please feel free to use any of my post to send in to the LA and/or the EP, including content from the links within it (print it off if you like).  Don't let them fob you off, you are not mad, you are fighting for your child (potentially her life).
    Perhaps you could secretly video your daughter melting down and send it in on a disk.
    Please do ensure she has been seen by CAMHS for mental health support, and at the end of the day, if they refuse a statement or it's all just too awful, can you home-educate her for good?  I just finished home-educating for a 3 year stint.  It can be done.