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First structured observation on Friday

bertieh

Hello

After a long time coming, we finally have an ASD assessment for my 8 year old son at St George's hospital in Tooting, London on Friday.   He has a structured observation and play based assessment on Friday with a clinical psychologist, then my husband and I have been invited in for a separate interview the following week.  We have also been asked to provide reports from school, his play therapist and we have filled out a few questionaires. 

Does anyone have any advice on how I can prepare my son for Friday?  We have talked about there being lots of people who want to help him feel happier, and that we all love him very much and there's nothing to be scared about - but as I don't know exactly what's going to happen, I am not sure what to tell him.  Any ideas please? I know that he is feeling scared and worried and different.  All the work and reassurance we put in telling him that everyone's different etc, and then these assessments are obviously trying to find a difference!  He has worked this one out...

I also would appreciate any advice on what to expect as parents and what I should be looking out for.  SHould I take a copy of the NICE guidelines with me for instance, or are there any pitfalls to avoid or be aware of?  Thanks for all your help.

  • Former Member
    Former Member

    There are issues with getting a definite diagnosis. All you will ever get is an "opinion" from an expert as there is no definitive test (like an x-ray tells you that you have a broken leg) for autism. SOme of their reluctance may be that they are reluctant to commit resources to someone unless they have a severe enough problem that merits a significant effort. Also, the label can have unfortunate negative effects on some people who think that it excuses their behaviour or it puts the responsibility on someone else to fix the problem.

    Sometimes the label is necessary to make a school (or employer etc) recognise that someone has specific needs and that they are not thriving in the current regime.

    Ultimately, your son needs to work out ways of managing himself and a diagnosis may help this process - particularly if he understands that it means that he is like his dad or like the other people that you know and that it is quite feasible to have a decent life with the condition. I managed with the condition (undiagnosed) for a long time until I was employed by a company that was particularly hostile to people like me. The label protected me but ultimately I have not been able to change their way of dealing with people so I have found another job. I am hoping that they will be more suitable for me and I am also going to try and be more reasonable as I now understand what difference the condition can make to the way I behave.

  • Hi - thanks for the link.  I'll check it out.  

    Brining along the NICE guidelines was just a tip I've picked up from other families who have recently gone through this process and were not satisfied with the outcome. Seems a bit over the top to me too, but it's what I've heard others reccommend.  I unfortunately live in a part of the country where the authorities are not very good at giving a definate diagnosis which results in an EHC plan, or even agreeing to assessments, so I'm happy that we've finally got this far at least. 

    As for making a good parent - who is perfect?!  Smile  we all have our strenghts and weaknessess and make mistakes.  There's no doubt that we all as parents influence our children both positively and negatively, ASD or not.   

    thanks for taking the time to respond to my post - it's good to know there is help and advice out there.

  • Former Member
    Former Member

    The extent and scientific nature of your preparations prompted the thought in my mind. It was just a thought and it may have no basis in fact. I'm not sure how many NT folk would think of taking the NICE guidelines along to a consultation.

    There is a free online test that is a surprisingly good indicator of whether an adult is on the spectrum aspergerstest.net/.../ It isn't the same as a good professional opinion. I personally think that most parents of suspected ASD children should do this test - the inherited nature of the condition is well established and, in my opinion as a certified Aspie, ASD people may not always make the most natural parents and this can exacerbate problems in their children. I wished I had known about this before I raised my (non ASD certified) children!

  • Thanks for the advice.  So far, we're doing ok at being calm, so that's good! just want to make sure we're doing all we can to make this a good experience for my son. 

    We're always open to suggestions and more than happy to find out new things- so not offended at all. I have often thought that he shares many traits with my his dad and grandfather, but had never considered my input. Just out of interest, what prompted you to ask the question? 

  • Former Member
    Former Member

    The best preparation is to help him relax. They may find it easier to identify his communication problems etc if he is as calm. An angry and distressed child will just look angry and distressed and the autism will be harder to identify behind the cloud of emotion.

    Please don't be offended by my next question. Your post made me wonder whether you have considered the possibility of him having inherited some autistic traits from yourselves? I'm comfortable that I have inherited my autism from my father (and two generations before him!).