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"Not allowed" to be autistic

pdaddio83

This is a bit of a rant, but I'm in an unhappy mood. Right now I feel like I'm not allowed to be the true me, like I'm expected to mask all the time because I'm the parent in a family and I must be the one who leads by example.

Our autistic daughter just started secondary school, so us and the school have made sure that she's been settled in as best as possible. Everyone has been really good to her, and made sure she's included yet also provisioned for. Everyone tells us how she's allowed to be herself and make her as comfortable as possible.

But, and this is me feeling a bit selfish here, who says any of that to me? Just because I'm 30 years late to the party, do I not get any acceptance or adjustments to help me? This is one of the reasons why I chose not to get a diagnosis myself, because I knew deep down that no-one would care - just carry on and remember to be reasonable all the time.

The true me came out tonight which almost resulted in an argument with my wife. And although I think she's ok with it now, I'm just reliving all the bad emotions and memories again since I can't let go.

Parents

  • This is a common experience among those of us who have an autism diagnosis later in life (30 and above), which is yet another set of reasons why it’s even more critical that post diagnosis assessments to properly assess in a systematic way the type and level of autism and appropriate levels of autism support in any areas of life must become a basic legal entitlement for those diagnosed with autism and a basic legal obligation on all providers both public and private - the universities must share some of the responsibility for this, as they are not providing the proper courses on autism which is a dereliction of civic duty towards disabled people in our society, which also contradicts the leftist principles which they seem to be following these days - the NHS should not be expected to handle issues with mental health, disability or hidden disability, as just like GP’s they are ill-equipped to do so and the system of going to GP’s for referrals needs to be scrapped, as it is demeaning and degrading - with so many people being diagnosed later in life in the coming years, this is going to create a serious problem in the coming years with an elderly autistic population who will need enhanced support - there is too much focus on children’s autism and the lame excuses why autistic adults cannot be helped need to stop and indeed, many changes to the current system don’t even involve funding - even for those support services that do need funding, the money required could be found by cutting out mismanagement, wastage, misuse of public funds and even potential fraud, if a root and branch investigation was carried out into the NHS and all other public bodies, many of whom are too big for even the largest infusions of cash - those autism charities that do exist and who have almost zero funding are doing far better work with the funding they do have by comparison and are only being held back in many cases by lack of funding - if an autism census was carried out, there would be a sizeable number of respondents over 30 

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  • This is a common experience among those of us who have an autism diagnosis later in life (30 and above), which is yet another set of reasons why it’s even more critical that post diagnosis assessments to properly assess in a systematic way the type and level of autism and appropriate levels of autism support in any areas of life must become a basic legal entitlement for those diagnosed with autism and a basic legal obligation on all providers both public and private - the universities must share some of the responsibility for this, as they are not providing the proper courses on autism which is a dereliction of civic duty towards disabled people in our society, which also contradicts the leftist principles which they seem to be following these days - the NHS should not be expected to handle issues with mental health, disability or hidden disability, as just like GP’s they are ill-equipped to do so and the system of going to GP’s for referrals needs to be scrapped, as it is demeaning and degrading - with so many people being diagnosed later in life in the coming years, this is going to create a serious problem in the coming years with an elderly autistic population who will need enhanced support - there is too much focus on children’s autism and the lame excuses why autistic adults cannot be helped need to stop and indeed, many changes to the current system don’t even involve funding - even for those support services that do need funding, the money required could be found by cutting out mismanagement, wastage, misuse of public funds and even potential fraud, if a root and branch investigation was carried out into the NHS and all other public bodies, many of whom are too big for even the largest infusions of cash - those autism charities that do exist and who have almost zero funding are doing far better work with the funding they do have by comparison and are only being held back in many cases by lack of funding - if an autism census was carried out, there would be a sizeable number of respondents over 30 

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