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Hello. Am I in for a world of pain?

AlexBrown

Hello all. 

I just wanted to introduce myself to this forum. I'm an early 30s parent. Me and my wife had our son two years ago. Our first child. Everything was perfect in our lives until we started noticing repetitive behaviour in our child. We noticed this a few weeks ago - hand flapping, constant spinning of car wheels, tip toeing, not responding to his name. He was actually doing this for ages but we had assumed his hand flap was a goodbye wage, for example. 

We have just started to look into diagnosis, such as seeing a paediatric, seeing a dietician. I've been disappointed at the waiting list. Is it just me or is everyone else also feeling the frustration? 

As a first time parent it comes as a shock, almost disbelief and the hard part is in readjusting my expectations for my son. I had all sorts of ideas of what father and son would do. It's so devastating. I started a blog because I had no way of releasing the pain than to write it. www.bestparenticanbe.com

Have you guys found a way to get your son or daughter diagnosed faster? We have been told a 2 year waiting list. My son is 2. Surely there must be something that can be done? Is it worth going private?

Any advice and experiences would be very very much appreciated.

I just want to feel strong about my child's future. It's devastating to think he may not get the same opportunities I did as a child.

Alex.

Parents

  • I am a parent. Yes readjusting is the a necessary step, but not the one you describe. 

    The best thing you might do at this stage is to change your sources. Stop reading the dehumanising degrading ableist speak of the relevant organisations and start reading literature and research from people who want to improve the lives of autistic people and achieve acceptance and equality.

    You need to challenge assumptions and values behind the statements of the sources you ve' been reading.

    AlexBrown said:
    Everything was perfect in our lives until we started noticing repetitive behaviour in our child.

    How about reading Sinclair's 'Don't mourn for us".

    AlexBrown said:
    constant spinning of car wheels

    [that what wheels are for?]

    AlexBrown said:
    almost disbelief and the hard part is in readjusting my expectations for my son. I had all sorts of ideas of what father and son would do. It's so devastating.

    You don't believe a son with a disability could do things with you? Have aspirations and a fulfilling life? He is less worthy than the imaginary child you dreamt of?

    Read the Human rights Act, the Equality Act, the international convention on human rights and the UN convention on the rights of people with disabilities.

    Repeating the slogans of the 'tragedy', victimhood and cure lobby is also a repetitive behaviour.

    Those slogans are devaluing the humanity and denying equality to autistic people.

    Autism is a life long condition, there cannot be a cure for autism as such and your son will be always be autistic. So a 'perfect' life on the terms of those organisation is the life where your son doesn't exist. I am sure you don't think of it this way, but these are the values and implications behind those slogans.

    All people are born equal in dignity and rights and this includes the right of autonomy. Whatever behaviours about his own mind and body he has are his own for him to choose, not for others to control. By zooming on 'repetitive behaviours' you are undermining the person the right of autonomy.

    You son will always be autistic even if you train him to hide it to be 'indistinguishable'. it might make you feel good, but leave him with destroyed self concept, with the same internal angst and possibly with PTSD.

    Projecting these ableist limiting and degrading attitudes on your own child cannot be good for either of you. Your son growing up will need fair and accepting attitudes in society. He will need people to accommodate his differences and accept him as equal for who he is. It will be his life to live, his aspirations and his dreams to dream.  

    Spreading and promoting this ableist concept of autism is the last thing your child needs.

    You need to be on his side.

Reply

  • I am a parent. Yes readjusting is the a necessary step, but not the one you describe. 

    The best thing you might do at this stage is to change your sources. Stop reading the dehumanising degrading ableist speak of the relevant organisations and start reading literature and research from people who want to improve the lives of autistic people and achieve acceptance and equality.

    You need to challenge assumptions and values behind the statements of the sources you ve' been reading.

    AlexBrown said:
    Everything was perfect in our lives until we started noticing repetitive behaviour in our child.

    How about reading Sinclair's 'Don't mourn for us".

    AlexBrown said:
    constant spinning of car wheels

    [that what wheels are for?]

    AlexBrown said:
    almost disbelief and the hard part is in readjusting my expectations for my son. I had all sorts of ideas of what father and son would do. It's so devastating.

    You don't believe a son with a disability could do things with you? Have aspirations and a fulfilling life? He is less worthy than the imaginary child you dreamt of?

    Read the Human rights Act, the Equality Act, the international convention on human rights and the UN convention on the rights of people with disabilities.

    Repeating the slogans of the 'tragedy', victimhood and cure lobby is also a repetitive behaviour.

    Those slogans are devaluing the humanity and denying equality to autistic people.

    Autism is a life long condition, there cannot be a cure for autism as such and your son will be always be autistic. So a 'perfect' life on the terms of those organisation is the life where your son doesn't exist. I am sure you don't think of it this way, but these are the values and implications behind those slogans.

    All people are born equal in dignity and rights and this includes the right of autonomy. Whatever behaviours about his own mind and body he has are his own for him to choose, not for others to control. By zooming on 'repetitive behaviours' you are undermining the person the right of autonomy.

    You son will always be autistic even if you train him to hide it to be 'indistinguishable'. it might make you feel good, but leave him with destroyed self concept, with the same internal angst and possibly with PTSD.

    Projecting these ableist limiting and degrading attitudes on your own child cannot be good for either of you. Your son growing up will need fair and accepting attitudes in society. He will need people to accommodate his differences and accept him as equal for who he is. It will be his life to live, his aspirations and his dreams to dream.  

    Spreading and promoting this ableist concept of autism is the last thing your child needs.

    You need to be on his side.

Children
  • in reply to Tinyexplorer

    You're absolutely right. As much as your response is direct, I totally agree with you. Why should I limit my perception of my child? That's only going to rub onto him. I have no right to assume he can't live a fulfilled life. I guess it's the fear of a parent. The fear that my child will get bullied at school. Maybe he will not be able to find a partner. All sorts of unsubstantiated beliefs.

    I need to get out of that mentality. 

    Would you mind sharing some of your experiences? WIthout making assumptions, I'm assuming maybe you also have an autistic child? What has worked for you and not?

    By the way my wife needs to see your comment. She spends all day worrying about our son, and crying about it. She needs to see how she might impact his future by over-worrying. I will show this message to her. Thank you so much. It's the wake up call she needs.