Remaining politically neutral during General Election 2024


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Hi, I'm Juliewoo! My son has been diagnosed with autism. We feel a bit lost as to what to do next.

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Juliewoo
Juliewoo Community member Posts: 4 Listener
Hi, I found this forum after looking for advice/support. My son has recently been diagnosed with High Functioning Autism (paediatrician said he would previously have been diagnosed with Asperger's). This has taken over two years since his school instigated a referral, but he's had his challenges since way before that.
I try to stay positive, but find myself crying when I think about it. We feel a bit lost as to what to do next.
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community

    I can imagine how you are feeling it must be very daunting 

    There are lots of members here with the same diagnosis for themselves and their children 

    Have a look in the parents and carers section as well as the specialist section for autism it may give you some useful info 

    There is also a programme here called navigation which may be of interest 

    Hope you get some support 
  • chiarieds
    chiarieds Community member Posts: 16,153 Disability Gamechanger
    edited April 2021
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    Hi @Juliewoo - & welcome to this friendly & supportive community. Scope has a programme called 'Navigate,' which many parents have found helpful. Here's more info about it: https://www.scope.org.uk/family-services/navigate/
    Last, but not least, we're all here to listen at any time. :)
  • Juliewoo
    Juliewoo Community member Posts: 4 Listener
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    Hi @chiarieds
    Thank you ?. I will take a look.
    I'm not used to online forums, but this seems a good one to start with. 

  • Tori_Scope
    Tori_Scope Scope Posts: 12,508 Disability Gamechanger
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    Hello and welcome to the community @Juliewoo :) It's perfectly normal to feel overwhelmed, so you're certainly not alone.

    I've moved your post into our parents, carers, and disabled parents category, which you might like to take a look through. We also have a category dedicated to discussions around autism

    I'd definitely encourage you to take a look at the links that chiarieds provided. The family services teams are really friendly, and many parents find them helpful.

    How is your son getting on at school? Is he receiving any support? 

    Have you been in contact with the National Autistic Society (NAS) at all? They are another good resource for parents and carers. They run a parent-to-parent emotional support helpline which you might like to access, as it'd allow you to speak one on one with someone who understand what you're going through. 

    National Campaigns Officer at Scope, she/her

  • Juliewoo
    Juliewoo Community member Posts: 4 Listener
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    Thanks Tori. 
    He's excelling in all his school subjects and is really bright. He struggles with the social side more than anything and can be easily aggressive. We have more trouble at home than school. I wonder if anyone else has this too?
    We tried the NAS helpline the other day, but there is a 30 day waiting time for a response! Also looking at more local ASD charities. Feel a bit let down by our local authority support though. 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,508 Disability Gamechanger
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    It's good to hear he's doing well at school @Juliewoo. Do you have a good relationship with his teachers, and the SENCo? 

    Anecdotally, I have heard of things often being more challenging at home than school. It's not your fault of course, I think there are lots of factors at play. Does he have a good routine at home? Have you spoken to the school to see if they have any good tips on strategies to help manage his behaviour? 

    Yes, I've heard recently from someone else that the waiting time is lengthy. Sorry about that! Please do check out the Scope services linked above in the meantime.

    Good luck looking for local charities, they might be a better bet. Let us know how you get on with the search.

    In what way do you feel let down? What have they offered, if anything? 

    National Campaigns Officer at Scope, she/her

  • Juliewoo
    Juliewoo Community member Posts: 4 Listener
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    We were told about his ASD at the referral and waited a month for a letter to arrive, which would be specific to him. Apart from a few information  sheets, some which aren't even relevant, we haven't been offered anything. I suppose this has to do with Covid. Our next appointment is in 5-6 months. I'm hoping we may get referred to support for his aggressive behaviour. We're meeting with his SENco next week, she taught my son at nursery and has been following his progress through school.  His teachers are brilliant too.
    I'm not usually so negative, we've just had a few difficult years. I keep telling myself that loads of people have more challenges than us.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,508 Disability Gamechanger
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    That certainly does sound challenging @Juliewoo. You don't sound too negative at all. 

    Perhaps the school might be able to help with getting some support for your son's aggressive behaviour. Have you ever looked into the NHS's Children and Young People's Mental Health Services (CYPMHS, formerly CAMHS)? Could they be of help?

    Good luck with the SENCo meeting. It sounds like she'll be in a good position to know what might best help your son. Please do let us know how it goes.

    National Campaigns Officer at Scope, she/her

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