• Replies 5 replies
  • Subscribers 85 subscribers
  • Views 738 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Advise in dealing with the struggle of Autism

Amy123

Hello my name is Tanaya I'm 24 and I'm writing this on behalf of my partner Amy who is also 24. Amy has struggled ever since she was younger but were more focused on how Amy is now. We've been advised to check this website out as we've heard some really good things about it and could do with some advise or help with Amy at this time. Amy is having a lot of problems with the NHS and gp. she was told for about 6 months they had put 2 separate referrals through for her being ADHD and autism. we would constantly call gp and the specialist line to see what was going on and Amy was getting told loads of different answers by different care people which you could imagine is overwhelming for Amy and made her have this very bad states. Amy was then told the autism referral never went through, even though they told her for 6 months that it had. This made Amy have a lot more bad states. Amy would be pasting up and down the room playing with fidget toys and seeing her mind going 1000 miles ahead of herself. amys care plan was to ring 111 option but we just keep getting advised to speak to gp. 

Routine is very important to Amy, things have to be done or started at set times, If someone is meant to arrive at amys lets say by 6:30 and they didn't arrive till 6:50, this sets Amy off due to it being change or out or routine. Amy has been given a sensory check list to complete and has to wait till the gp next call her and then they will be assessing to send a referral for Amy. for example Amy was dying her hair and got hair dye all over her which made Amy panic as she hated it having all over her

if you guys have any advise of how I can help Amy while she goes through this long period of wait that would be grateful to how to help Amy 

Amy struggles with

Loud noises, busy places, change of routines/plans, bright lights, certain textures (that will make her just freeze) being touched or going near her when she's in a state 

Amy loves

routine, set times, her music, ear defenders, sensory stuff 

I don't know if we can reply to comments but if we can then I will reply with any questions too 

Thank you 

  • I have been waiting 3 years on the NHS but am now in a seperate waiting list for a private diagnosis via 'right to choose' . Amy needs to insist to her GP that this is the path she wants to take. I have battled ASD for 53 years but only realised 3 years ago that is what I had. 

    Amy probabably needs lots of patience and understanding, which is not always easy. In my life I have been through good and bad times, Amy will most probabaly do the same. You are both young and this maybe a bad time but things will hopefully improve? The ASD will still be there for ever but mabe the hand life deals you will be easier. My advice is do what makes both of you happy, life is a compromise. Hopefully her diagnosis will bring some clarity, and some help, but don't bank on that.

    good luck

    Rob

  • If money for a private autism assessment is a problem, and they are expensive, then it might be useful to look at the 'Right to Choose' route. This is where the NHS pay for a private assessment for you. See here: psychiatry-uk.com/.../

  • Hi

    There are things that can help, and they are very easy to do. Basically, do everything that limits stress and change.

    Ok, so avoid noisy places if possible, if not use headphones and music, ear defenders or ear plugs etc.

    Wearing tinted glasses or sunglasses can help with the light. Keep things dull around the home. Switch out to dimmer bulbs etc.

    Avoid the textures not liked, and if they are unavoidable, look at wearing gloves or alternatives. Look at clothes that feel nice on the skin too.

    If she’s having a meltdown leave her alone. Soothing words might help, or just your presence in the room. She really won’t be in control of herself in this phase, so make sure she cannot hurt herself. Afterwards, she will need plenty of rest and downtime.

    To avoid meltdowns, or at least lessen them, you’ll need to work out strategies to make life as low key and stress free as possible.

    Changes are difficult for us all. They key is preparing for them when you are able to. Look up places online if you haven’t been there before, try out the routes, get all knowledge beforehand. If it’s a sudden change then turning to something enjoyable might help, like listening to favourite music, doing a favourite hobby, going to the safe place or room, anything to distract. If she likes to stim, that will help too.

  • in reply to Dawn

    Yeah Amy feels that it could be autism as do her family, I think the biggest question Amy has is she just wants to know how to manage with the struggles that she has and to see if anyone else out there has struggled with these sorts of things to and what they have found managed to help them. Amy’s biggest struggle is when she has a meltdown and gets in these bad states, Amy wants to learn if there’s anything out there to help her calm down before she gets into these massive states, for example when something has gone wrong or is out of routine for amy she will paste up and down and won’t let anyone near her and just fidgets with her sensory toys while her brain is going 1000 miles a hour. 

    is there anyways I can help amy when she gets irate when things go wrong or when change happen? We find this one is a big one for amy 

    thank you for messaging back and trying to help 

  • I'm so sorry you are being messed about with the referrals.  The NHS waiting lists are pretty awful, I'm afraid.

    The only way around the long wait though, is go private, if you can.  The good private practitioners also have waits though, albeit not nearly as bad as the NHS.  Sadly, as more and more of us who were missed as children start to realise that we are autistic, the system is overloading with the missed generations, particularly girls and women.

    Does Amy herself feel that she is autistic?  It might not be a bad idea to go through and AQ50 questionnaire.  There are plenty online.  Then, learn as much as you can about autism and treat 'as if'.  The wait for confirmation from a professional is horrible, but many people self-identify and don't even want to go through the assessment process.  Formerly diagnosed or not, there's nothing to stop any of us finding other autistic voices and looking for other ways to manage everyday autistic problems any time we like.

    Does Amy have any specific questions she'd like to ask the community about?  Many of us might recognise the problem and have little tips and tricks that we use ourselves.  She'd at least find a bunch of folks here that go through some of the same things.

    I'd also recommend reading too.  There are lots of good books written by people like Luke Beardon and Tony Attwood which are useful.  I've also found it both entertaining and helpful to read the autobiographies of other autistic people - I recognise so much.  There are some great ones written by recently diagnosed autistic women in the public eye; Fern Brady, Christine McGuiness and I gather Melanie Sykes is about to publish one too.  

    Jump on in, Amy, and fire away with your questions.  We'll try to help.