Help, feeling unsure, scared and alone — Scope | Disability forum
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Help, feeling unsure, scared and alone

Beano Community member Posts: 3 Listener

We have just discovered that a lot of our toddler's quirky behaviour could be a symptom of autism, e.g., repetitive jumping/running, lack of eye contact, scared of noise. We are due to see the Health Visitor in a week or so for her to review the questionnaires that we have completed.

The reality of our son potentially having autism has really hit us hard and we are feeling pretty scared and alone, not to mention very emotional. We are unsure what this means for his
future, what does it mean about schooling, do we need a diagnosis (does this impact on schools?), unsure what happens next, and just feel like our whole life has been turned upside down. We appreciate that a lot of this is because we have far more questions than answers which will resolve over time, but if anyone can offer any help or support, we would be immensely grateful.xx


  • kimandrea
    kimandrea Community member Posts: 5 Listener
    I can totally relate to how you are feeling, I went through complete fear and panic when my son was first diagnosed at the age of 3.
    I got him into a wonderful school with mixed disabilities, after school he went onto college and now aged 30 attends a centre 4 days a week wherr he does various activities of his choice. If I could give any advice, it would be to take things one day and one step at a time. No-one can say how your child will develop, I was given many negatives from the professionals and my son has done so much better than predicted
  • Beano
    Beano Community member Posts: 3 Listener
    edited October 2017
    Thank you. We are just feeling completely devastated and don't know which way to turn. I need to pull myself together really as all I want to do is cry. Pathetic really, I know. My worries are just about his future, how he will cope at school, and how he will cope independently. But your advice is sound in that we should just take it one step at a time. Thank you again.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hi Beano and welcome

    We have many members who will relate to what you are going through so you are not alone.
    If I understand things correctly, autism is not so much a disability but more an additional super ability. Many great people in history are now thought to have been on the spectrum.
    I am sure that we have members who will explain better as I am still trying to understand


    Be all you can be, make  every day count. Namaste
  • kimandrea
    kimandrea Community member Posts: 5 Listener
    Beano I was exactly the same, I felt as though someone had died! Dont be hard on yourself, just take things slowly. I worried about so many things that didnt happen! You will all be ok
  • lonewarrior
    lonewarrior Community member Posts: 23 Connected
    Hi beans what you are experiencing is not uncommon for most parents,One thing I can say for sure is there are plenty of people like me that are testament to how well we can adapt into normal life. I am not formerly diagnosed but I am autistic beyond any doubt, we are trying to spread the word about autism as most think it is someone who doesn't talk and flaps thier hands rhythmically and has no ability to feel empathy. Absolute nonesense, if you've met someone with autism then you have met one person with autism,no two people are the same. Yes we share various traits but these vary enormously. On a forum I belong to there are some amazing people who cannot bear to mix with people, thier anxiety levels rise and they avoid it,whereas I don't like crowds but my anxiety makes my heart pound but I just start counting things to refocus my thoughts.
    As I say we are all as individual as the perceived normal people or neurotypicals.
    Your son is lucky that these days there are resources available to help him adjust into society. He should get help at school. I will have to say it's a postcode lottery as to what is available to you. Just recently the MP's debated in Westminster Hall about delays in diagnosing autism. A set of statutes were brought in to make sure all people should be entitled to help.that was in 2009 THE Autism act.
    But with cuts and staff shortages ALL NHS resources are pushed beyond breaking point.
    So push and keep pushing for help and support,never give up,He who shouts loudest gets results. So very sad to have to say that.
    By the way I am autistic, male aged55 have a happy marriage and two grown daughters,one is now proud mother of a wonderful boy, And of course I am a very proud grandad.
    Always remember even if he appears not to hear you or respond! He can hear and does understand,we are very caring regardless of how severe our autism effects us. Another common misbelief that we don't have emotions,we in fact FEEL the suffering of others so much it hurts,we are just unable to actually communicate our sorrow.
    Take care and be strong,things for you will calm down as you learn more about him.
    This Site us amazing but a dedicated site may get you more answers from mums and people who have come through it. The National Autistic Society is pretty good,it stopped working this weekend but is usually always available to anyone.
  • lonewarrior
    lonewarrior Community member Posts: 23 Connected
    Sorry about the typo!Beano not beans.autocorrect yeah right.
  • [Deleted User]
    [Deleted User] Posts: 740 Listener
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  • Beano
    Beano Community member Posts: 3 Listener
    I would like to thank you all for your replies which I have read several times and I will admit that I have (selfishly) shed more tears. I just want my son to be happy. And I just want to know what I can do to make life better/easier/bearable for him. I was heartbroken yesterday when he was playing in a soft play and kids wanted to play with him but he just wasn't interested. And of course, people don't understand. I have always been aware of autism and tried to be kind and supportive but it breaks my heart when others aren't the same.

    i guess at the moment im swimming in the sea of the unknown. I'm worried that I may do something wrong to make it worse for him. So for example, he loves his train set. I cleared it away whilst cleaning and didn't get it back out. And that's when we realised that's when we have seen an increase in his stimming. So now I'm desperate to get it back out this morning, but then I wonder whether I'm doing the wrong thing letting us play with it for hours.  I'm worrying about how we'll cope in public toilets with the noise of the hand dryers. I'm worried how he'll cope on an aeroplane (assuming we go on the holiday we have booked). I'm worried about how I tell others and how they will react - I don't want them to see him differently. But
    modt of all, I'm worried about how I do the best for him.

    He's very communicative and loves to talk about and watch trains. I swear at 2 years old he knows more about trains than I do! 

    Anyway, I could write lots more, but I'm just venting/ranting/waffling. Thank you for listening and I have no doubt I'll be back on here for help and hopefully in time to support others.
  • kimandrea
    kimandrea Community member Posts: 5 Listener
    My son loved his trains and still does! He now has a big electric one at home and spends lots of time enjoying it. Its his thing, other kids liked computer games but Rory was never interested. He was also terrified of flying, my doctor used to give me some liquid sedation for him so we coukd still go. He LOVES flying now, lots of things that worried him as a child he has learnt to manage as an adult. Yes he might see things differently to other children his age, but dont fret about it. Try and see things from his perspective, dont try and force him to fit in with his peer group - you will jyst stress you both out. Have a look online and see if theres any groups for autism mums in your area, its always good to tslk to people going through similar things
  • Alex
    Alex Posts: 1,305 Pioneering
    Hi Beano,

    Welcome to the community. 

    Scope have produced some videos by parents in a similar situation that you might find interesting - they're the top four posts.

    There's also a guide for parents on our website.


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