My 5 year old been diagnosed with ASD - how can I help him? — Scope | Disability forum
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My 5 year old been diagnosed with ASD - how can I help him?

tammi Community member Posts: 3 Listener
edited October 2017 in Autism and neurodiversity
my 5 year old soon has just been diognosed with asd and I'm still trying to come to terms with it as iv not been given much information to help me and I'm kind of feeling like a failure because I don't know how to help him any advice would be greatfully recieved thank you for reading 


  • MJDean
    MJDean Community member Posts: 40 Courageous
    edited December 2017

    Hi @tammi 

    Welcome to the online community. I am on the autistic spectrum myself so understand your anxiety and concern. There is plenty of information and advice on ASD in the links below.

    Here are also some threads where you can find a range of helpful topics;

    If you have any specific questions I would more than happy to help you, please feel free to ask :)
  • tammi
    tammi Community member Posts: 3 Listener
    Thankyou so much for your reply I guess the main questions I have is what I can do for my son as I really only know what I have read online about asd
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi @tammi can you explain a little more? You want to know what you can do for your son, in what way? Education, behaviour. health, social? If you can let us know what you need to know, we can try and help.
    Senior online community officer
  • Mia_Alumni
    Mia_Alumni Community member Posts: 31 Connected
    Hi @tammi

    I understand you are looking into how you can best help your son who has just been diagnosed with ASD. You say that you don't have much information about the condition, and you are finding it hard to come to terms with. You feel like a failure because you don't know how to help him. 

    I am here to tell you that this is a perfectly natural and expected reaction to this diagnosis, and you are most certainly not a failure, although I appreciate you feel that way. You are not alone in not having much information about it, and the signs can be easy to miss. Typical reactions are of confusion, guilt, anger, and also relief, because there is finally a strong explanation for certain behaviours. 

    Your son being diagnosed at age 5 is in a way a good thing, as it means you can start now to get him the right support and help he needs. Many people go their whole lives not knowing, and not having access to the right help, so now is your opportunity to learn as much as you can to help him. ASD is not an illness or a disease, and while it cannot be cured, there's a lot that can be done to help. You could start by reading through the information we have available on ASD, and you could also order an Information Pack from The National Autistic Society's Autism Helpline. This pack will include information about ASD, as well as a leaflet that outlines what post-diagnostic support is available.

    Keep in mind that ASD is a spectrum condition, and while there are traits/characteristics that will present challenges, there will also be things that your son can do well. Like everyone, he will have strengths and weaknesses and it is about you knowing what they are. Promote and enhance his strengths, and work on any areas of weakness. 

    These weaknesses may be in the common areas of behaviour, communication, and sensory sensitivities. Have a read through this linked information as it will be a strong starting point to know what to expect as he grows up, and strategies you can try to improve communication and behaviour.

    A good place to start for local support services and groups would be the Autism Services Directory. This directory has details of groups, services, courses, and products all across the UK for autistic people, their families, and people who work with them. Using your postcode or browsing by category, you can search for social groups, parent support programmes, schools, interventions and therapies, solicitors, advocates, and much more. Just get in touch with the services that you’re looking for to learn more about them, and disregard any you don’t find useful.

    Get in touch with his school, let them know about his diagnosis, and discuss reasonable adjustments that can be made to support him at school. The school have a duty to ensure they are doing the best they can to help him reach his potential and achieve the best educational outcomes. If you want more information about how to get him the educational support he needs, or to learn more about your rights and entitlements, think about contacting the Education Rights Service.  If you find his teachers need more information about his condition think about sharing this advice for teachers information, and let them know about his particular needs or challenges. You can also expect different behaviour between home and school. 

    You could get in touch with your local social services department to find out what community care support you could get from them. This could be in the form of assessing your son's needs or your needs as his parent/carer. You could also browse your local offer

    Another idea could be to speak to other parents, who know what it's like to raise an autistic child. It's great that you have reached out on our online community. Think also of joining local groups or perhaps you could even contact the Parent to Parent Service.

    I hope this helps as a starting point. There's so much to consider, and while I have outlined some ideas, if you do have any questions please do let me know and I'll do my best to help you further.

    All the very best, 

    Helpline Information Officer
    Phone: 0808 800 3333
    Email: [email protected]
  • Geoark
    Geoark Community member Posts: 1,462 Disability Gamechanger
    Hello @tammi and welcome to the community.

    First of all how you are feeling is how many parents feel when first confronted with this diagnosis. Initially when it was first mentioned to us that our daughter might have Aspergers it took a lot of reading and research as much of the information is about boys and girls can present very differently. It was very frustrating in the first place.

    Second, I understand that these days the diagnosis is ASD rather than the range of diagnosis which was given previously. Personally I am not sure this is a good thing, especially from the parents perspective. Autism is a spectrum and while each person is an individual it can be difficult to know what to say not knowing which end of the spectrum the child might be.

    My daughter got her diagnosis just when she starting to want to be more independent and go places on her own, after being a few times with her mum. She started making friends, and not ones I was keen about. So I was constantly questioning my decisions, was I saying yes or no because she was a girl, it was or was not age appropriate, because she had aspergers or because it made me uncomfortable. I positively cringed inwards with some of her choices for clothes and make up, but always supported her decisions. It doesn't get easier as they are growing up, but she got a first at university for creative writing and works in a busy high street shop where they are now looking to start her on the promotion ladder. Things I was really sceptical she could cope with when she was 12.

    If you haven't done so already apply for DLA for your son. Just be honest with the amount of extra support he needs. We never thought we would get it and did not bother for a while, as we saw what we did as part of parenting. So was surprised when we got it for her. The biggest difference for her was we were able to give her pocket money so she could buy her own clothes and other things she wanted. It helped her to appreciate the value of money and budgeting for what she wanted, but also gave her the freedom to experiment to find out who she was as an individual. It also meant we could afford internet access and Sky, both of which she benefited from. If you get DLA and get child tax credits let the taxman know, as you will get enhanced payments.
    My biggest advice though is keep your expectations high, but tempered by who your son is, and aim to raise a child who is as independent as they can be. For my daughter it was going to university and working in retail. For another individual it could be something more simple, such as making a hot drink, a simple meal, knowing how to wash their clothes. 

    One of the hardest things for many parents is listening to other parents talk about their children's successes but then being dismissive of yours, and this can include family. You will always find people here who will celebrate along with you.

    I am really sorry that this is just a general post and probably not much help to you at the moment, as Sam said, if you can be more specific on what you need we can help you with more specific advice.

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • tammi
    tammi Community member Posts: 3 Listener
    Thank You everyone sorry i havent replied im still trying to get up to speed on everything xx
  • MJDean
    MJDean Community member Posts: 40 Courageous
    No problem @tammi, no need to apologise  :)


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