Hello. Am I in for a world of pain?

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.

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.

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.

Hi there. Thank you for your kind words. I want to be a good parent but wierdly I feel paralysed. So overwhelmed that it's easier not to do anything about it. My wife is taking the burden. I barely interact with my kid yet I'm thinking about him all the time. It's really bizarre. I think I'm overwhelmed and haven't fully come around to the fact that there's going to be a very, very long road ahead.

As for your diagnosis, I'm sorry to hear you're upset about it. If I can say one thing to make you feel better, that would be that everyone in the world is going through some sort of "issue". Some people are unhappy with life in general, some people are anxious about work and job security etc. Everyone has something which they think isn't optimal.

The way I think about this is going very high level. It's a bit of a wierd analogy but think of the universe. It's faced many things but it keeps going on and on. No one problem is really a problem to the universe. All our frustrations and problems, at the end of the day are momentary. Once we've left earth, nothing really matters. None of our problems are problems anymore. Enjoy whatever time you have here. It's who you are. We're all here on earth for a split of a moment. As long as you're able to live through life its happiness that matters. Be happy. Really. It's not a buzz word. That's what I strive for in my life now. As I explained in my previous post, I'm realizing I have a lot of odd quirks - I check the car multiple times to see if its locked, I check the gas hob 10 times to make sure it's off. But these repetiive behavious also makes me good at work. I'm thorough and I don't make too many mistakes.

Acceptance is the first road to enlightenment. 

Wow what a thoughtful post. You've certainly got a lot more mileage in understanding this journey than I have. I've just entered it. Your point about the definition of disability is absolutely right. It's people who limit those that they think are disabled. It's really timely because I'm reading a book called Autism: How To Raise A Happy Child (https://www.amazon.co.uk/Autism-raise-happy-autistic-child/dp/1409176282/) and one of the first chapters talks about exactly what you have just mentioned.

The perception needs to be reframed. I've been thinking about this really hard and over the past 1-2 months being more aware of my child's possible autism has forced me to re-think what I know about life. In the past I never even gave a second thought to people I deemed "disabled". It was just this wierd thing that 1 in every million people suffered from. Now I realise autism and any other development conditions are a lot more prevalent. It was just that I was blind to it. Sometimes I wonder whether I am autistic too. I get frustrated at things easily. I sometimes have repetitive behaviours (I need to check my car multiple times - all windows locked, all doors shut, all lights off - it's the fear of leaving my car open at night and maybe the car battery dies if everything isn't shut down). I need to check the kitchen gas hobs thoroughly before going to sleep. All the windows off. It's a very "thorough" mentality. I just thought it was OCD. Maybe I have some form of autism? If I did, that would actually explain a lot of things about my child. I wouldn't mind being diagnosed as autistic.

About your children and you - it seems like you are in a wonderful and loving relationship with them. It's really nice to hear and I hope I can grow to be the parent my child needs. 

Thanks. I guess it's the thought of "how will our son survive the real world". We're here now. But what about when we're gone? Maybe we are overthinking it. Much of it comes from the fear of the unknown. Neither of us know how our son's life will pan out. Maybe he becomes independent and has his own family. Or maybe he stays at home with us all his life. That's fine. But what happens when we are gone. 

Hey. I got a diagnosis of autism yesterday and I'm really upset about it and I'm also really upset about my own negative stereotypes of autism and I feel like my emotional reaction has pissed off some people who think that I should be more positive about it. But you know what, shame is not a helpful or healthy emotion and other people telling me that I shouldn't react a certain way is not helping me to grow.  For myself, I would really like to be more positive about it and believe that I will be eventually, but it takes time and as am I, you are allowed to be upset. Trying to repress your emotions is not going to help you work through the situation or come to acceptance. I'm sure you are a great parent and will be a great parent to an autistic child as well. You sound as though you want to be, so you are already half way there. 

You are welcome. I have two autistic daughters. They are both very girly, very bubbly, very caring a creative. they are totally autistic and have many challenges but they are nothing like the stereotype and this is why I doubt that anyone is exactly like that stereotype. It was created looking from outside onto something people didn't understand. It is important to consider it from within, looking from the inside out .

The first experiences I can recall are probably dealing with the tantrums when my elder daughter was toddler.. She was perfect, until I bring her shopping in a mall or a supermarket. All toddlers have tantrums, and I just wondered why I couldn't deal and make them go away, as if other parents had perfect answers.. With age I realised all parents are as bewildered as I was, just 'inventing it' as they go along, trying their best. Toddlers do have tantrums, just like babies do cry and we always manage to calm them with experience and love.

Now I know about sensory stimulation and overload, I can understand why my elder was so averse to shopping and supermarkets, why the very first impossible meltdown of my younger daughter happened at the airport -  the buzz, the crowds, the echo, the lights, the smells. 

I suppose I was fortunate that in the area where we live the professionals and parental attitudes were quite 'enlightened'. We are fortunate in this country, I really think that. When it started, teachers at school just said this happens, we have systems and support for that, these children have rights and a bright future. It is true, whatever the shortcomings of the SEN support at school, it is there, you have rights, processes and support and ways to influence and improve it.  I often rant about frustrations about SEN, quite rightly, but it is there, it is the essential first step. My elder daughter went to grammar school and has every chance to go to university and do well in life. As a parent it is a stressful struggle, you need to understand and use the system, to learn to 'operate' it for your child. But it is there and has some built in system to improve it. It is a journey, and if your child is on the spectrum, you are already on it. The stress and counterproductive struggle could be taken out though..

Before the suspicion of autism in my elder daughter I was generally aware of human rights and equality, but I never really considered them specifically and deeply, in a way that you do when it affects you directly.  When I started reading about Asperger's, I couldn't make sense of it. It was bizarre mix of descriptions that didn't make sense to me. My daughter didn't play with Ninja Turtles and didn't speak like a robot, but even if she did, so what? I asked the Senco about this, and she told me "Asperger's is perceived more favourably, it is more posh to have Asperger's, than to have ADHD"  .. this is funny, recalling it now. My daughter has ADHD too. It is absurd to argue what is posh, but basically intelligent professional people know that autistic people have a lot of potential, there is no presumption of inequality in people in general. We are fortunate in this country. Until the cure and tragedy lobby gets in your social media feed. 

So I really had to re-frame and reconsider all my thinking about mental conditions, about disability. I had to throw away all of my cultural preconceptions. The thing that helped me was reading the equality act. The definition of disability is not being deficient, but doing things differently, and having the right for this difference to be accommodated.  I would advise any parent to consider the social model of disability philosophically.  It is not autism in itself that is disabling, but the barriers and attitudes in society. These barriers could be changed and overcome. There are laws and systems to that effect. It is a journey, but a lot of autistic people do live fulfilling lives.

Of course I understand that for many autistic people autism also comes with a multitude of medical problems that need appropriate medical help and support, and if possible cures, for things like epilepsy, depression. I am not denying these very real needs for specialist medical support.

But attitudes fostering dignity, equality and autonomy benefit all autistic people, however significant their medical and social care needs.

It was easier for me because I was bullied and experienced a lot of the same challenges all my life. So it was quite clear and strait forward for me to see which side I should be on. As it is often the case, having understood Asperger, I was diagnosed as well. I am an autistic woman. I smashed school and a few university degrees, I worked in demanding and complex jobs. I have friends, I have a loving family. I can really tell that being autistic doesn't take away anything that you could aspire to and achieve. You just need to know yourself and go about it in a different way. Perhaps the journey is more scenic. There are challenges due to barriers in society. But every minority has to work on overcoming and breaking some barriers.  I believe the future of my daughters is bright. I can see them growing in independence and skills every week. They'll get there. 

AlexBrown said:

She spends all day worrying about our son, and crying about it.

What is it specifically that you and your wife are worrying about? Maybe explaining some of that will help us to help you stop worrying.