Hello, does anyone else have experience of the Autism Spectrum Disorder (ASD) pathway? — Scope | Disability forum
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Hello, does anyone else have experience of the Autism Spectrum Disorder (ASD) pathway?

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Rowenw95
Rowenw95 Community member Posts: 7 Listener
edited March 2021 in Autism and neurodiversity
Hi my name is rowen I have a 4 year old daughter who is prediagnosis on asd pathway I'm just wondering if there are other people to chat to and get support and advice and just maybe comfort knowing there's others in the same place 
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi and welcome to the community 

    You may find what you are looking for in our parents and carers section or parents of disabled children 

    Have a look around and feel free to join in or ask any questions 

    Will be nice to see you around 
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    Hi @rowen95 and welcome to our online community :) I'm glad you found us and I hope you and your daughter are enjoying today's beautiful weather.  Although I don't personally have experience of ASD, I can imagine it's a daunting process and I hope it goes smoothly for you both.

    I've moved your post to our Autism and Aspergers discussion category and this is one place that you can browse to find our other members stories about the ASD pathway experience.  Scope also have a webpage dedicated to 'Support without a diagnosis' that details what help your daughter will be entitled to at this point.

    As Scope is a pan-disability charity, we don't specialise in ASD so you might find it beneficial to visit The National Autistic Society website too for more resources and tailored guidance.

    It might also be worth taking a look at Scope's free 'Navigate' service which provides emotional support to the parents and care-givers of disabled children.  The team are a friendly bunch and they can help those on the pathway to a diagnosis, like yourself.  As part of the service, you would get support with: 
    • organising your thoughts and feelings
    • practical advice and suggestions
    • coping strategies and insights
    • taking positive actions and helping you with emotional wellbeing
    For more details on how to apply, just click on the link above :)

    If there's any particular part of the ASD pathway journey you have questions about, please fire away.  And, in the mean-time take care and we're here if you ever want to talk or vent.  
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    Hi cher 

    i have been in touch with navigate they told me about the online community and advised me to come online and be in touch with other parents whose children have disabilities i have been struggle with a few areas of her needs for example we struggle at bedtime so we are  now in touch with cerebra im also struggling with her outbursts and meltdowns as they can be violent towards myself and our home and have been hard to deal with tbh i was just hoping for some parents to talk to so i don't feel so alone in the situation,,

    on a more positive note we are really enjoying the weather my lg loves to be outdoors and loves to be active so its been excellent we have played out and been to the park its been excellent how are you doing,, i would love other people to chat to so anyone who is happy to chat feel free to message and we can being a single parent is difficult even more so going through all this so it would be nice to make some parent friends who can relate and understand that my child is different but its okay that she is 

    Thank you 

    Rowen xx
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    Hi jan 

    Thank you very much for commenting i will be sure to look around the website and try to interact with people im not quite sure how to use the site properly but look forward to interacting with other people who share my situations and can relate and feel similar so that would be nice to have people i can come to and talk with 

    Thanks 
    Rowen xx
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  • Jojolove
    Jojolove Community member Posts: 3 Listener
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    Hello Rowan
    I've just joined the scope community recently and I too have a child with autism traits & is highly sensory with all the meltdowns and routines to go with it. Oh and ADHD. It was a battle to go through the ADHD assessments and then going through the autism assessments (which we've finally completed after years of the process but we should hear back within 6weeks. My son is 11years old now and I'm still fighting for the support that he needs. It can be very lonely having a child with special needs. Even in a two parent household. I'm a single mom & basically my whole world revolves around him even though I have a 6yr old. We do not get invited to parties or functions or gatherings because people can be so nasty to the special needs people/children and so ignorant off autism & ADHD & peoples circumstances.
    If you ever want to chat or talk about ways you can reduce your little ones meltdowns and worries I can help you.
    Remember to stay strong you know your child the best. You are doing a great job ?
    Jojolove xx
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  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
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    Hi @Rowenw95 and @Jojolove :)

    I just wanted to say hello and add my own welcome to the community.

    How are you getting on @Rowenw95? No doubt you'll have been kept busy over Easter - particularly if you and your family had the opportunity to get out out to the park at the weekend! But I just wanted to check in with you and see if you have had chance to explore the community yet? I know that the site is still quite new to you - so just give us a shout if you would like any help finding your way around, or if you have any questions for us. 

    And welcome along @Jojolove :)

    Of course, the same applies to you - any questions, please do get in touch with us. In fact, I wonder if you might also want to start your own post in our Welcomes and Introductions space at some stage? That way your post as a new member will be flagged up to the community and they can offer you a proper welcome to the community as well. 

    Last of all, great to see that you've both already made a connection! Hope that you enjoy chatting to each other and sharing your experiences. A quick pointer - if you want to notify each other of the posts you've made, you can tag each other using the @ symbol followed by your username. Have a go with that and if you need any more help, just give us a shout!
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  • Jojolove
    Jojolove Community member Posts: 3 Listener
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    Hello caz thank you for your post and if saying hello. I would like to do a post to introduce myself to everyone. But I just don't know what section or how? Could help with this please
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Hi @Jojolove :) Here is a link to the welcomes and introductions category. If you look at the right hand side of the screen, you should see a 'new discussion' button. If you click that, you can make your own post. 

    You can also post a new discussion by using the '+ new discussion' button that is in the top banner of every page.

    You can view a list of all of our categories of discussion here.
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    Hi @Jojolove and @Caz_Scope

    Thank you for both replying to my post i appreciate you both taking the time to comment and welcome me,
    Jojo thanks for offering to chat with me i would love that your right struggling with it alone is hard and it does become centre of our world because we have to learn how to completely change our daily life in order to help our children feel more at ease with the world and your right people don't understand and will very often be mean or harsh when they don't understand or accept it, any advice for help with meltdowns and stuff would be amazing please am, trying to deal with these but its very new to me as my little girl is only 4 so its trying to find techniques and tips that work so any strategies would be great i will pop you a message so we can talk if that's okay with you. 

    Thanks Rowen xx
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    Hi @Caz_Scope

    Yeah we did manage to get out and get to the park this week it went okay , As I mentioned my little girl enjoys being outside so it helped to be able to get her out and about enjoying being outdoors. Easter has been busy she got to see some family so that was nice, it was a little stressful as at the moment her meltdowns have been happening a lot more frequently and I am unsure what has caused this. I have been in touch with cerebra also as am trying to get some advice on sleep as my little girl does not sleep so fingers crossed I will get some where with that but Easter was lovely we did some crafts and baking which she enjoys so that was nice I have also put together a little album of pictures and memories so I can start to do something with them. I have also been using a diary and notebook to try keep track of things like appointments and stuff as I have noticed that all of a sudden everything happens at once. I also spoke to someone about school meetings and was provided with the school meeting document to help me be prepared for the meetings 

    I would like to thank everyone for the help and support I am already receiving from the community its been major to me
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  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
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    You're very welcome @Rowenw95 <3

    Sounds like you've had a pretty hectic - but absolutely lovely - Easter weekend!! Lots and lots of different activities for your little girl there - and sounds like you've been pretty busy getting organised with things too. Hope that you managed to take a bit of time to relax after all that as well!

    Just to say once again that it's great to have you with us. Keep posting and I'm sure that you'll find a few more parents and families to connect with :)
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  • Jojolove
    Jojolove Community member Posts: 3 Listener
    edited April 2021
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    Hello Rowan & Tori
    Thank you for your support & welcoming me to this community. It means a lot to me. ?
    Rowan thanks for sharing with me & yes I can help you with routines and meltdowns. It would be lovely to chat. I don't know how we can chat on here it's all new to me lol so here's my number (Removed, personal details are not allowed on the community) we can chat on WhatsApp xx
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Jojolove said:
    Hello Rowan & Tori
    Thank you for your support & welcoming me to this community. It means a lot to me. ?
    Rowan thanks for sharing with me & yes I can help you with routines and meltdowns. It would be lovely to chat. I don't know how we can chat on here it's all new to me lol so here's my number (Removed, personal details are not allowed on the community) we can chat on WhatsApp xx
    Hi there, I hope you are well.

    Just to let you know I have had to remove part of your post as it contained personal information which is not allowed on the community, in accordance with our guidelines.
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    @Ross_Scope

    Hi ross is there any way for us to pass our details on to each other in order to communicate with eachother 

    @Jojolove hey thanks for passing on the details they were removed but hopefully we can find a way to get our details over to eachother and it would be amazing to be able to be in touch with another parent who can share and understand xx
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  • Rowenw95
    Rowenw95 Community member Posts: 7 Listener
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    hi @Caz_Scope

    It was very busy and hectic but its making me realise although what i am doing is for my daughter its making me realise i am getting to a point were i can do things i can use my mind and get into something so thats a postive 

    Having some time to relax and catch up on stuff today as my little girl visiting her dad so get sorted and then relax fingers crossed haha 

    its nice to be a part thanks xx
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
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    @Rowenw95 I hope you're managing to get some rest this afternoon!  One way of connecting with other members and sharing details is via private message.  You can do this when you reach the level of 'Whisperer' on the community, this means:
    Once you reach the level of ‘Whisperer’ (25 point), the ability to send private messages (PM) is also enabled. You can view your current rank on your profile page, next to your username, and your current number of points can be found in the ‘About’ section of your profile. 
    At the moment, you're on 15 points so if you continue to make comments and interact with others on the community (when time permits!), it won't be long before your PM function is enabled.  

    I'd always advise to be careful when speaking with others privately and sharing details so do be cautious  :)  
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