Recent asd mum of a 5 year old - socio communication disorder , does anyone have a similar little one ?

hi my son is 9 and uptil about 2 years was not digonosed he goes with the obsessions lego his his favourite any lego and superheroes he as limited speech and cannot hold a conversation ths doctor told us he only picks up the first word of a converation he as fads with foods vinegar his is favourite we have to control what he eats he will not play with other children and likes to be on his own. halloween is coming up and he loves that think its the costumes he is statmented at school and is in y5 not sure if i want him to go to high school or a special school i dont want him to get bullied

hi Muddlingthrough - yes it is about funding/postcode lottery/recession.  Plus some local authorities created more services in the good times than others did, such as schools, respite care services.   That's what I'm getting at.  Wouldbe good if there was the same "assessment form" regardless of where a family lived which was used to genuinely meet their needs (which will vary), rather than assessments being influenced by what's available financially in a particular area.  Yes, it is unfair, to put it mildly.  We all have to be vigilant to protect what we've got.  bw

We're getting pretty good support: SLT, input from a consultant paediatrician, fairly comprehensive statement for school, DLA, Carer's Allowance, positive and helpful attitide from (mainstream) school, local support group...

"Respite care".  Yeah, that'd be nice - we have no family nearby to help, but then it's our child, so that's kind of the deal!  Others have more need for help, I suspect...

It's all about a) funding and b) how effectively you can articulate the help your child needs and ask for it.  It's incredibly unfair, and will only get worse as the cuts really bite.

hi Jojo, squidgy + muddlingthrough - have read your posts a couple of times + feel a bit bothered.  When my son was little he had problems with communication + altho an adult, still does, altho he's learnt a lot over the years.  Autism will always result in language/communication difficulties - depends on how severe or not,that's all.  Also my son could + still can cope with certain changes.  However, other changes will really upset him.  He still uses some echolia, altho now because he's said it for years and generally speaking, knows what it means, altho he may not have known years ago.  He still has his obsessions - they change - things get dropped over time to be replaced with others.  When he was about 2, the following happened : he was identified as having communication problems, he went to speech therapy and a day nursery, he was referred for diagnosis, after a number of months autism was diagnosed, he was statemented, he went to schools for autistic children until he was 19.  We had a sw all that time + a limited amount of respite care.  I think you all should be offered this as a matter of course.  I see posts from parents querying statements, sw involvement, etc + I can't fathom out what's going on, unless it's to do with funding cuts in social care + health + they're prioritising.  Best wishes to you all.

5-y-o son is newl-diagnosed autistic/Aspergers, behaviour a bit erratic but rarely "typically autistic", and people are amazed when they hear he is.  Very delayed language and communication, now resolving but OMG the echolalia is DOING MY HEAD IN!  There, I've said it!

Thanks for messagng me too!

My daughter has been at mainstream last year but is going to SN school in Sept instead now because they couldn't cope with her (and her epilepsy). She learnt nothing last year and rarely played with the other kids, just alongside them. We are not statemented yet - we have an assessment place at the SN school which means they will do her statement while she is there but ultimately we wanted her at the SN school anyway. It was very hard work getting her there so I am hoping it works out!

We have had a social worker come out yes to assess our 'needs' - whether we can claim benefits, support groups, carers groups, playschemes, respite care etc - anything they think they can help with. We were signed off from thier care after a few weeks as we  didn't need much, we do get DLA and Carers Allowance cos of her epilepsy and she has been on a plyscheme over the hols but that's about it really.

The obsessions drive me bonkers - we get echololia of Peppa Pig episodes constantly. We just limit the amount of tv she gets to watch - just a bit before bedtime and some in the mornings and try to intriduce new programmes every now and then. The toys I don't mind so much cos they help with her imaginative play which she has little of.

Are you statemented yet? Are the school helping atall? Yes I worry a lot about her social life when she is older and her future in general (my husband worries she will be easily taken advantage of when she is a teenager (!) too).

xx

Hi

thank you for messaging me , your daughter sounds just like my son . how does your daughter cope at school ? is she statemented . i have read that we should have a social worker come and visit us , has this happened with you  ( sorry for all the questions !).  How do you cope with the obsession with peppa pig , is it toys and tv im guessing ? i dont know about you but i worry so much about his future and how he will cope socially xx

Hi there

My five year old daughter has been diagnosed with ASD since Feb and our speech therapist says it is mainly a socio communication disorder (plus we have learning difficulties too and a few other issues). She too is fine with eye contact and needs a certain amount of routine but can generally cope with the odd change. Yes we get obsessions too - currently Peppa Pig. She really struggles with making friends and identifying with other kids - she cannot talk to them or hold a conversation, or really understand what they are on about. She is fine with her younger brother and bosses him around no end! But doesn't really have conversations with him or us, just all echolalia.

We just sounded similar to you so thought I would say hello!

xx