To think no, autism is not a ‘gift’?

[RowRowYaStoat]

Does anyone else feel like this?
I’m feeling like the worlds worst parent right now. 12 year has been crying and kicking off since 7am this morning. After an awful few months , my patience is wearing thin.

Everything that goes wrong is my fault.
I honestly feels like he hates me (he doesn’t) but the way he talks to me, the way he shuts me out but expects me to fix everything.

The rigid thinking, total lack of compromise. The shouting, screaming.

The resistance to any change or expectation that he should do something himself.

The effect on siblings, the resentment they often feel. The fact my marriage is pushed to breaking point because the stress is immense.

And the lack of empathy from family and friends: “autism is a gift… embrace it !”.

I love my DS dearly. I’ll do anything to make him happy , but it’s just never enough. I always feel like he’s not happy and I worry how his perception of things is so different to the real situation.

And I lost my patience today.

Please tell me I’m not the only one to find this damned hard? Or am I just rubbish at this?

@RickiTarr
I agree with some of your points.
But overall (not aiming this at you) I don’t agree with the unpleasantness often seen towards parents of severely - yes, severely - affected children who are leading very, very difficult lives yet are told they don’t have a right to complain.

@RickiTarr

I suppose “high functioning” and “low functioning” are the best we have ? Although I don’t really like them and can imagine some parents like them even less?

I remember being asked 'where' on the spectrum my son was. I replied 'it depends what you are asking him to do'. That was many years ago before I even understood that this magical spectrum we speak of doesn't go from low to high. Even then I knew that different elements required more or less from him and there is no one true answer.

Now I have a much better understanding of his autism, of DD autism and of my own autism. People would probably label us all as HF, but realistically that's doesn't accurately describe the variances in struggles that we have.

@RaaRaaeee

Bloody hell, such a negative thread this has descended into. Of course it's more difficult to parent a child with autism, and no i don't think it 'a gift', but I don't see how believing it's the root of all evil can make the situation better either. Autistic children get the message all the time from society that their different, weird, odd, annoying- why do parents think it's a good idea to join in with this narrative? I don't understand it. Sorry to be harsh, but its little wonder that kids end up anxious and unhappy when their parents have decided that their life WILL be difficult and miserable because their autistic, and that their own parents resent them and act like a bloody martyrs for looking after them.

What utter twaddle. Your understanding of autism is clearly very limited. A lot if us here have children that wouldn’t notice, care or understand what the public thinks about them. My own son has absolutely no concept of the feelings or thoughts of people around him. He doesn’t know he’s autistic, he doesn’t know what that means. I could tell him he’s weird and he’d just repeat it back. A lot of people here are in a similar position that our children are profoundly affected by autism and it’s fucking hard work caring for them. We’re not martyrs but having 3 other NT children it’s 100% harder and it’s relentless and it’s never going to end. We will be caring for them until the end of our days.

@IhateBoswell

But you are comparing apples and oranges. It’s like a person with myopia who needs glasses claiming they speak for all visually impaired people, including those who need guide dogs and white sticks to live anything approaching a normal life. And bitching about whose entire lives revolve around caring for them, as a matter of necessity.

Did you actually just say that?

Nice middle class family, here, in our character suburban semi with dh working (doing battle with a bit of recalcitrant code) in our second reception room.

They're definitely autistic and no way on earth could we even pretend to shoehorn Ds2 into any label of "aspie". Feral, more like.

Way back when it used to be “Kanner” autism and Aspergers. I can’t remember without googling if anybody actually objected to “Kanner”

My son has the diagnosis and it’s the one that perfectly describes his autism and the one that I continue to use when asked. Nothing else does the job.

I’ve been using “profoundly autistic” lately which currently seems less objectionable but I’m sure it won’t last.

I really hate it when people say that wishing my boys could be rid of their autism is akin to wanting to change their personality. The impact of their autism is a barrier to their personality. They are both lovely happy boys but their social, communication and sensory issues make it so hard for them to just be. Life is so frustrating for them, and overwhelming. When they are comfortable and relaxed and their needs are met they are adorable, loving, lovely boys -DT2 now gives me kisses all the time and screams “MAAH” (he thinks he’s gently saying “mwah”). DT1 loves spelling words. They both find lots of things funny.

And then at other times they are slamming their heads into the floor in complete distress and often I don’t even know why.

I don’t want to change their personalities - I want them to be able to be themselves. I want them to be able to tell me they’re in pain or sad or happy.

DT2 has a visual impairment (certified) and it’s nowhere near as debilitating for him as the effects of his ASD. I know others who are the other way round, and saying so is acceptable. Don’t see why it should be different in reverse.

Not shocked to see the misogynistic dog whistle “martyr” cropping up either - I’m no fucking martyr.

I also use ‘profoundly autistic’ and have done for years.

@RickiTarr

Whoa, I’m not a twit 😂 I didn’t mean to offend you, genuinely. I don’t for a minute think your autism doesn’t affect you, there just doesn’t seem to be much consideration(?) in the autistic community for those who are... see, I can’t think of a word other than “severely” affected?

Sorry I hadn’t actually noticed that you had also said the incredibly inaccurate and irritating thing. 😏

It does get difficult and complicated, and it’s got more difficult and complicated since the DSMV effectively formalised the position that it’s all one condition. I’m not sure I agree that it is. It’s related, obviously, but you essentially have two large tents in terms of presentation and not much overlap.

That’s why I think two entirely different diagnoses would be better. Way back when it used to be “Kanner” autism and Aspergers. I can’t remember without googling if anybody actually objected to “Kanner” as a term or if it just withered as the whole “spectrum condition” rhetoric took over.

The spectrum thing was useful in getting so called “higher functioning” individuals diagnosed instead of leaving them to founder. (My generation were mostly diagnosed as adults, my DC’s generation were diagnosed as children, my dad’s generation never were diagnosed.)

Maybe its done its job, now though. People will feel differently about their conditions, but generally they need to have positive self-image, as much as possible, despite their differences. My autistic DC are verbal and in some ways high-functioning, so I need them to feel positive, despite the boulders in the road.

I definitely agree two separate diagnosis,s would be helpful ,my non verbal son who has no concept he has autism and is happy playing with water and blu tack all day has absolutely nothing in common with people who used to be diagnosed with Asperger's,in my town we have a fair few charity ,s that do activities ,days out etc with children with autism ,but it's not a one size fits all ,most of the activities are geared towards children who are higher functioning,which my son has absolutely no interest in,I'm not knocking them ,just they are just not appropriate for him .

My son is high functioning in an academic sense so hie asd doesn’t affect that MILD
However emotionally he is very badly affected. Anxiety, panic attacks, poor communication, lack of empathy, difficulty making friends. SEVERE
So while it can seem mild to an observer because the child is masking and seeming to fit in , underneath they are only just coping
Definitely need more down time

In a lot of ways DS would appear high functioning. With full time 1-1 he is now achieving in line with his age in most areas academically, just behind in some and excelling in his areas of excellence.

However his communication and social skills are poor, he has anxiety to the point that at the moment he can only go to school and can’t cope with anywhere else (there again a few years back he couldn’t even get to school) and he is tube fed because he doesn’t eat. He needs constant support and supervision.

And that’s the issue with trying to fit people into boxes, they don’t fit!

dd14 don't see her asd has a gift. She said if she could change one thing she would change the Asd because it affects her in so many ways.

@TheCuddy lobster tank post made me laugh!

We are going to the aquarium Sunday and ds said to me can I swim in the tank with the sharks? I said to Dh if he carries his behaviour on he will be getting his wish 😂

Ds tried to cut his fringe off with scissors at his special school today.

When his teacher told me my first thought was massive improvement on last year when he tried to cut his tongue off Lol!

to everyone

I think it depends on how the autism manifests and how much impact it has on their lives and those who care for them. The most challenging to care for are those who are aggressive, non verbal and melt down because you have to protect them and those around them and feel awful that you can't understand them enough to make them feel better. Ive seen parents exhausted and worried about what path to take next. I'm incredibly grateful that I'm not in their shoes. However some of the children I've cared for are fascinating when they can discuss how they are seeing and understanding the world.

DS is high functioning in that he has average cognitive ability. But low functioning if we consider impact on every day life. He is high functioning because he can pass for NT. But he has no independent life skills and is not in education work or training. He still says (at 20) he will live with me until I die, and then he will die. This makes me more sad than I can express.

@KOKOagainandagain

DS is high functioning in that he has average cognitive ability. But low functioning if we consider impact on every day life. He is high functioning because he can pass for NT. But he has no independent life skills and is not in education work or training. He still says (at 20) he will live with me until I die, and then he will die. This makes me more sad than I can express.

That is heartbreaking. So many people do not realise that HFA / Asperger’s can have such a detrimental impact. It really is a hidden disability.

There is still so little help out there - my adult nephew ds didn't leave the house for two years, wouldn't sign on or get GP help as wouldn't go to see them, my dsis was told they'd have to section him to be able to help him.

He's 'high functioning'.