To think my ds dosnt have asd

[Usernamehistory2225684]

My 2 and a half ur old ds is in the middle of assessment for asd.
He has no words apart from dada ( he lost mama) he understands some like give daddy your shoes etc he gives hugs and kisses his eye contact is poor but better with me. His play is repetitive and can get upset if he’s routine is not the same he still puts things in his mouth he can point to ask and clap when he’s happy. Does he sound like someone with asd?

interesting take on autism speaks

Also, they openly call autism an “unmitigated disaster for families” and advocate for a cure above all else. Which is offensive and bullshit.

Could you link to abuse you are quoting as being advocated by autism speaks? I can't find any reference to it.

I disagree that trying to find a cure is bullshit. Having a child with autism has completely altered the course of our lives and it's been heartbreaking to witness at times. I understand my view differs from yours but I think both views are valid.

ABA, bleach enemas and even eugenics in order to prevent autism occurring.

I’m sorry things have been rough for you, you’re entitled to feel any way you like.

What nobody, Autism Speaks included, is entitled to do is label autistic people as wrong, or deficient, or “less” and imply the only success stories are the ones who can present as NT no matter the cost. That is harmful and damaging and quite frankly bloody offensive.

I’m autistic, my children are autistic. We’re not wrong, we’re not a problem to be solved, we are who we are. And no NT person has the right to tell us otherwise.

Google Autism Speaks therapy controversies and you’ll find plenty.

here

SoddingUnicorns - it’s a hard one. I have a young adult with ASD (diagnosed Aspie back in the day just after they commenced school, and I will call them that as that’s what they call themselves). When thinking of my child I would completely agree with you regarding a cure being regarded as offensive as my child’s differences CAN be embraced.

I have a friend who has a child with ASD. A teenager who can’t speak, can’t interact at all, is constantly incredibly frustrated, stressed out and violent (now permanently sedated for their own safety and others), not toilet trained etc. They most certainly can’t read or write let alone jump on a forum and express their opinion. I think it’s fair to say their lives and that of their family IS pretty much an unmitigated disaster and they would tell anyone who thought a cure was offensive to fuck right off.

I’m not saying that in some situations a cure or even treatment is a bad thing. I’m saying autism speaks (with links to why) are not advocating proper ideas, but eradication of autistic people. Bleach enemas have killed children and irreversibly damaged others.

Electric shock therapy for example is barbaric and inappropriate for autism, yet they push it.

So I’m not claiming to speak for all autistic people, or even to know all about all kinds of autism, I’m just asking people to get their proper information from an organisation which doesn’t advocate the eradication, experimentation or abuse of people who are autistic. That’s all. Not sure why it’s so controversial, when to me what they’re saying is far far worse.

I have 1 son who has hfa, a dh who has hfa and another son who is being assessed but seems to be more severe than his dad and brother.

I don't think any of them are wrong, deficient or anything like that. I just don't want my boys to struggle, suffer or be unsafe (obviously I don't want that for dh either but he is happy as he is and perfectly capable of not running into roads etc so that's all fine with me). My eldest just needs a bit of tolerance and understanding and he will be ok most of the time. He does send me off into a panic when he isn't where he said he would be and with his phone switched off but that's something I suffer with more than him!

My youngest is constantly trying to make a run for it into the nearest road or climbing something he shouldn't. When I say I would love a cure for him I just want him to be safe and happy. I hate not being able to take him to so many places because he isn't safe there. And if he would go to sleep at a reasonable time without hurting himself or me then that would be nice too.

Excellently put HoppingPavlova

My son has asd but was very verbal at that age and his differences took a time to show.

The spectrum is enormous.

My nephew also has asd and did not speak until the age of 6. He has just graduated with a masters in engineering.

I think a diagnosis is not a question of a label but understanding what a child needs and then providing that. Try to focus on this as a chance to have his needs listed and then work on those. The label is secondary.

This is not a journey any of us expected to be on but truly a diagnosis can be a positive step in moving forward.

This is not a journey any of us expected to be on but truly a diagnosis can be a positive step in moving forward

Absolutely agree with this. Diagnosis in our case opened doors to support/services that would never have been available without it.

It’s made an enormous difference to my children and on a personal level as an adult has significantly improved my MH because I understand who I am and why I am the way I am now. Instead of feeling lost and confused and kind of locked out, which is how I’d felt all my life before that.

To clarify- I wasn't promoting autism speaks, it was just the first place I found the MCHAT checklist. As far as I know that was developed independently of autism speaks? (Whoever they are). I found the MCHAT useful when ds was younger.

zzzzz, love how you only chose the continence and communication!

Not sure how you struggle to understand that some presentations of autism may be unbearable for a family. I have incontinence issues. But I can deal with it all myself. My family don’t have to clean up my wee and poo 24/7. And stick me in hand proof jumpsuits so I don’t stick my hands in it (try getting these in adult sizes!), fling it everywhere and paint everything with it. I know two families with autism who live this aspect every minute of every day with their teenage children and it’s never going to change. They think this aspect is pretty disastrous, not sure they would give a shit you think that’s offensive.

Never being able to leave the house as a family because someone always needs to be home with the family member who can’t deal with any stimuli and no one will volunteer to look after them because of the associated difficulties. Having bad experience after bad experience with any government funded carer (they get no choice) who can’t seem to keep the person safe.

Having to gave your child drugged out on medication so they don’t hurt themselves or attack their siblings and their parents or carers. No one thinks that’s ideal but after having siblings limbs broken, parents ribs fractured etc they don’t have much choice. And you are annoyed and offended to read that these families do consider the situation to be very much a disaster and that their child’s challenges have ruined their family life. Rightio!

The problem with autism is that it is such an enormous spectrum and while it is absolutely horrifying to think that people like my child and those who are able to post eloquently here on a forum would need to be ‘cured’ people must also be able to see that in some cases quality of life for the person and their family is just so bad that a cure would be a godsend.

www.autism.org.uk/#

The problem with autism is that it is such an enormous spectrum and while it is absolutely horrifying to think that people like my child and those who are able to post eloquently here on a forum would need to be ‘cured’ people must also be able to see that in some cases quality of life for the person and their family is just so bad that a cure would be a godsend

Where did I say a cure was a bad thing in some cases? I didn’t. What I am trying (and apparently failing) to explain is that starting at a standpoint where a cure is the desirable outcome and that all autistic people cease to exist because of that cure because autism is always the worst thing that could happen is offensive.

I’ve been jumped on for suggesting people might be better getting their info from an organisation that doesn’t view autistic people as a problem to be eradicated, and all of a sudden the most extreme examples are being thrown at me as if I’m a) stupid b) unaware that autism is a spectrum c) saying they don’t matter.

All due respect, I never implied those things. You read them that way. And just because I’m autistic doesn’t mean my opinion isn’t valid, or that my children don’t struggle (in fact I didn’t say what level my children are at so a lot of assumptions made).

Basically what I’m trying to say is yes, there are some autistic people for whom a cure would be beneficial. But for a NT parent to tell me I’ve no right to feel how I feel as an autistic woman is bullshit, I’m sorry, but it just is.

So try reading my posts again before you attack, and don’t bother telling me that I’m saying things that I’m not thank you.

That wasn’t just about the post I quoted by the way. Just for clarification.

Right I wrote a big post and it disappeared.

Basically what I’m trying to say is that I’m pretty fed up of some NT people telling me I’m wrong or that my experiences as an autistic adult or as the parent to autistic children aren’t relevant or don’t matter because it’s not their experience.

I’m very aware that some autistic people require 24 hour care, we still don’t know the level of care DS2 will require. Just because my children can walk and talk doesn’t mean they don’t struggle, it doesn’t mean they aren’t as valid or important, and it doesn’t mean that their lives are easy.

What is absolutely clear is that in some circles there are NT people who will attack, dismiss, malign or demean any autistic person who shares their experiences because “they have it harder” and the autistic person who is able to speak for themselves must be ok because they are articulate. I’m sorry but that is unmitigated bullshit.

You attack me for having no idea what your children or friend’s children go through while failing to see the irony of dismissing what I and my children go through.

But hey, I can speak up so I mustn’t be “that bad” eh? Shows how much you know.

zzzzz if anything I said upset you, I am sorry. It wasn’t my intention.

And please everyone, just remember. No matter your experiences, you don’t have the right to dismiss someone else’s as less or play the martyr.

And you are annoyed and offended to read that these families do consider the situation to be very much a disaster and that their child’s challenges have ruined their family life. Rightio!

I would very much appreciate you not putting words in my mouth thank you. I’m autistic, not stupid. I said that starting from a point of view where all autism is viewed as an issue and should be cured was offensive. Which it is.

But don’t let what I actually said interrupt your little tirade will you?

I didn’t say you had no right to want a cure. But who the fuck are you to tell me there must be one for everyone? You have no idea what I’ve had to do for my kids. Because you didn’t ask, you just made assumptions. Which is the fucking problem.

While you’re busy being a martyr, consider that other people have valid viewpoints too.

@zzzzz I’m glad, and thank you. I’ve seen many of yours and always think you make good points in a better way than I manage!