You don't look Autistic ??

Hi  All,

I'm not one who gets involved with online forums around my problems namely mental health ,autism. But sometimes i feel the need to vent my frustration. I do have serious problems but i get on with it no matter how bad they are. I go for dog walks and  my eyes look like i've been sobbing for a month ? when i feel the need to explain to someone about my problems without going on to much all i get back is 'well you don't look autistic' ? 

I't winds me up to the point where i want to say something ,and i just think whatever !  I have never felt in all my life that i'm being driven to isolation. I have had recent suicidal thoughts which have been absolutely horrendous but i just kept going. 

I had depression so bad i don't honestly think i could explain what it felt like. support is a word i now treat as a joke ? although i have had a anxiety disorder for 25 yrs and mental health problems i have always had mostly good jobs.

But i have only been told of autism diagnosis this year from my psychiatrist, i feel so hard done by why this wasn't picked up a long,long time ago ?   I am not actually in employment at the moment ,and wish to work in the mental health field. 

I'm speechless at some of the people who are supposed to be there to support people like us and  simply don't have a clue ?  It is a joke.

My problem is that i will not be trodden all over or fobbed off,and i will defend my human rights and entitlements' to my last breath . I'm in norfolk does anybody have any ideas about support and getting involved with like minded adults in my area.

Regards

mark.

Parents
  • Hi Mark, I'm Blue.

    I also happened to live in Norfolk and will be twenty five by the end of this year. I can list a few organisation that i am currently getting support from if that helps. I know where you're coming from because i had to wait six years from the age of sixteen to be assessed. I Wasn't diagnosed until 2019 when i was finally diagnosed age 22 years old. Through those six years waiting i was denied support and missed out on obtaining a actual education and was forced into working in some horrendous conditions & spent the last eight years on and off benefits, i have done so much free work experience its a joke, online learning and Job centre training opportunities and honestly its a load of rubbish that lead to nowhere.

    The organisation i have tried and i really recommend avoiding are The ShawTrust, Genuis Within, Ixion, . These organisations despite two of them being set up to assist people with nuerodivergencies, learning difficulties and mental health have no basic understanding and will either fob you off or pressure you into false opportunities like leisure learning opportunities or pointless work experience. They will also will try and force you into inappropriate short term work opportunities to fulfill their targets. Coaching sessions from Genuis within must be a cruel joke, they offer three one to one  phone call sessions or three group sessions over the teams to tell you they can do nothing and that you too high functioning for their Kickstarter scheme. 

    If you are looking for one to one support for assistance looking into work or educational opportunities then there's only one person within Norfolk i can Recommend and her name is Lynn Keane who is currently working in for "The Chances Project" In Thetford. The organisation she works for is underfunded garbage but Lynn is very proactive, will not force you or pressure you into situations you do not want to pursue and does not pretend to understand Autism but will listen to you and tailor the support to you individually. 

    The Princes Trust Team Programme that operates in Dereham may be option if your 25 years or under when you apply for their programme. I would only look into the Dereham programme as is operated by an amazing women called chantel who very supportive and understand autism as her step son has complex needs. 

    if you are looking for post autism support then i recommend applying for post autism support through Autism Service Norfolk which is apart of the Norfolk Community Health and Care NHS Trust. They operate from Room 97, Norwich Community Hospital, Bowthorpe Road, Norwich NR2  3TU. 

  • Hi Blue,

    You couldn't make this up ,I've been through the experiences you mention early on in your post !  OMG exactly what you have written happened to me only literally days ago !  I wont mention the organisation but  my words to a certain person from a certain organisation was ' not qualified to work with people like me, you don't know what your talking about ?  All your doing is making sure that your own targets are reached and your backside is covered' !  what does the Autism Service Norfolk actually do ? 

Reply
  • Hi Blue,

    You couldn't make this up ,I've been through the experiences you mention early on in your post !  OMG exactly what you have written happened to me only literally days ago !  I wont mention the organisation but  my words to a certain person from a certain organisation was ' not qualified to work with people like me, you don't know what your talking about ?  All your doing is making sure that your own targets are reached and your backside is covered' !  what does the Autism Service Norfolk actually do ? 

Children
  • Interesting ? I have actually emailed them yesterday so ill wait and see what happens next ? It sounds a lot better than many other organisations out there ?  I'm still gobsmacked at the lack of adult support .I have always found that with my own mental health problems it has been a shocking situation,25 years of it i should really write a book .  

  • Typically they offer you three sessions, Unlike all the fake help and organisations out there they are not target focused but they focus on individuals which means the often stray away from the three sessions they originally offer if they believe you need them.

    The original three sessions focus on different things but the first sessions explores your feelings about your diagnosis & adjusting to a new diagnosis. The second session focuses on how to telling others about your diagnosis while starting to think about possible areas for reasonable adjustments. The third session is about your reasonable adjustments & signposting to appropriate services.

    Because my situation was complex they strayed away from the three session structure and brought a phycologist who with the post autism support worker have counselled me into accepting stimming, to accept my level ability , to accept my needs reasonable adjustments & have helped me moved on from all the negative stuff the happened because of families issues.

    I am still interacting with them and they are developing during my sessions with them a health passport and letter for reasonable adjustments in the workplace so that i can hand into a possible future employer to improve my chances at achieving a long term sustainable employment opportunities.

    They have signed post me to a few organisations, health and welfare team & Employment scheme.

    Because my GP has failed to record information, my medical records have gone missing from the last two decades and GP fails to fill out DWP forms out to support benefit claims they have written a letter to support my PIP claim.  

    Because my situation was so negative and complex adult social services was involved prior to them reaching out to me, i was on the waiting list since i was diagnosed few years ago. The Post autism support team is rather new but they worked with and interacted with my social workers and support workers.