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I'm new advise please

Siobhan87's picture
by
Siobhan87


I'm new advise please

Fri 6 Jun 2014 8:09am
Topic: 

Hi every one I have a son who's 2.5 years the last couple of months he's been quite hard work and it's only the last couple of weeks we have thought it isn't his age. He can say words when prompted but only really puts one sentence together he has no sense of danger what so ever he's always falling off something or into something no matter how many times we tell him not to climb on things hes nearly gave mea heart attack so many times it's so worrying. He's obsessed with keys anyone who comes through the door hes taking there keys out there hand. He's such a loving little boy but he is so rough and climbs all over us a million times a day and it really hurts sometimes. He crys if we go places and really doesn't like change when we moved house 6 months ago it took him 4 weeks to settle in his bed room. It's only now these things have started to add up and some charcaritics are autistic I just don't want to run to my gp and it not be I'm just wondering if any body could give me a little more information. He gets terrible excezma from head to toe with infections so we are consultant led with his skin. 

Thabks in advance Siobhan 

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10 Comments

  • Siobhan87's picture

    He also gets very very upset when he doesn't get his own way and so many times hes made him self sick with crying I'm so worried about all these things and don't lnow where to start 

  • Whirling Mind's picture

    There is no harm in going to your GP and asking for the assessment process to be started.  The earlier the better.  It would be multi-disciplinary anyway so they might start with assessing his speech and language and other things before moving onto the psychological part of the assessment.

  • Siobhan87's picture

    Thanks for your reply I shall get an appointment with the gp next week thud last couple of months have been so hard I have a 3 and half year old as well and she's hard work some days feel like I'm loosing it some days x

  • Cat30's picture

    Hi Siobhan,

    Sorry you are having such a tough time. Frown When you go to the GP, they may ask you questions about social interaction, eg does he bring you things to look at, does he point, will he engage in play together etc. It's worth having a think about these questions before you go. This might be of help

    http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-children/is-it-autism.aspx

    It may be worth visiting your local children's centre for advice and support, regardless of whether it is Autism, and I would suggest this as I think just having someone to chat to about the problems you are having might help you feel a bit better. 

    It sounds as if he might have some sensory issues, the need for contact and deep pressure for example. My son responds very well to squeezing especially his hands and feet. He likes deep pressure from a hand pressed firmly on his chest or forehead and this calms him when he is upset. He also likes being squashed with pillows. We just pile duvets, pillows, cushions, everything on to the double bed and squish him. he loves having pillows dropped on him and it helped him learn 1,2,3 go when he was little. We squash him with and roll him on a exercise ball and he enjoys bouncing on a trampoline. These are the main things we do to avoid getting roughed up!

    PS do absolutely ask for any specific advice here, and we will try to help, many of us have experience of challenging parenting.

  • benc's picture

    Hey,

    We are the same Siobhan, our little boy is just over 2 and we suspect he might be autistic. He is very repetative and does not like being around other children is own age or younger. He does not stop and when he does just sit there such as being on toilet he flaps his hands flicks his ears and nips/squeezes himself. We have had HV and pre school inclusion team out over a month ago who said they would refer to speech therapist as he does not say a single word but does understand us. Also we have been referred to community peadiatrician which is a 12 month waiting list. Took him to GP today who was about as much use as a chocolate fireguard and said we just need to wait for those appointments. Am i being unreasonable thinking 1 year waiting for an assessment is ridiculas? We have to wait a year for our son to be seen yet we have been contacted by someone related to pre school inclusion team asking to come out and fill forms in to claim some benefits. Is this what we have now no one to help our children but people employed to tell us how to claim money from the government. We are so frustrated with not getting any help.

    Ben

  • Cat30's picture

    hi Ben,

    Yes, In my opinion 12 months is far too long to wait for assessment, and sadly not unusual. It may be possible to get some speech therapy in place before then and I would try to pursue this via the HV. Your local children's centre may have specific groups for communication that are run by speech therapists. You may be able to access support via your local NAS branch without a diagnosis. So for example they run autism specific parenting courses, which may be of help.

    If you are pretty sure of the outcome if the assessment then proceed as much as you can as if it had already happened. He/you should not be without support because of assessment delays. We found this book very helpful in the non verbal days.

    http://www.winslowresources.com/hanen-more-than-words.html

  • Whirling Mind's picture

    According to the NHS' own NICE Guidelines children are meant to be assessed within 3 months of referral, so you can ask to be referred out of area to where they have a much more reasonable waiting list.

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

    1.5 Autism diagnostic assessment for children and young people

    1.5.1 Start the autism diagnostic assessment within 3 months of the referral to the autism team.

  • benc's picture

    Thank you for the advice. So we have chased the referal up to which they said we just have to wait it out basically. Finally got in touch with speech therapst which is 4 month wait for intial consultation then a 4-6 month wait after that if he needs it. Im disgusted with the service. If this is so common employ additional staff. We are seriously thinking of going private as there is no way I could leave him at nursery next year.

    Ben

  • OthoDPS's picture

    I would agree waiting 12 months is too long for assessment, and this is coming from someone who had to wait that long!

    Unfortunately, whilst the NICE guidelines state that a child must be assessed within 3 months of referral, that is only once they are referred to the autism diagnositics team. What this meant for us, is that Theo had assessmentsand interventions in place from April 2012 - January 2014, and then he was formally transferred to the diagnositic team (who were the ones seeing him previously but not in a diagnositic capacity, again a nice little loophole there!), and by Feb this year he had been diagnosed. 

    All I can advise is keep on at them about it, and if need be complain. We never did but they seemed to get the hint we wanted things going by the amount of times we rang each week, and when this became rather regular we suddenly had a space for assesment given to us, even though we had been told it would be another 6-9 months in October 2013!

  • Whirling Mind's picture

    http://www.change.org/p/dept-of-health-consistency-within-the-nhs-when-diagnosing-an-autism-spectrum-condition/u/53a1d1d52a87ce266f00034b?tk=FIJDGtZpt-hkB6qtEUbkdLAtQERfi1zxQ8khf8Ks_FI&utm_source=petition_update&utm_medium=email&utm_campaign=petition_update_email

    "18 Jun 2014 — Parents still are continuing to write to me about delay in diagnosis of an autism spectrum condition. Our survey results have been shared through Officials from Dept of Health with their Children and Young Peoples Forum led by Autism Diagnostic Expert Dr Gillian Baird."

    (by Anna Kennedy, OBE)

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