To wish that there was a cure for ASD

[pigletmania]

Before you flame me, I have a dd 5, with possible ASD (waiting dx) and developmental delay. My goodness its hard for her and us. I really feel for her not being able to participate with other children due to her sn, trapped in a body that does not work. I have seen glimmers of what is underneath and know that she is intelligent, funny witty but her difficulties get in the way.

She goes to a MS with a statement, and since ds (3 months) was born she has found it hard to adjust, and bites and pinches as she is not able to express herself. this has happened at school where she has bitten hard her TA and other children, and now according to her class teacher other children are scared of her . We went to a meeting on Friday, in which we were told that the school did not have the recources to cope with her and that we would have to look at more specialist provision, thus leaving children and environment that she is famliar with. I just feel so , I would give anything for her not to have this, and to be like the other children.

Afterwards my dh did some research and found that a gluten and dairy free diet can help significantly which children who have Autism, so much so that they are 'cured' we are going to try this, and keep and open mind. I would love it if it did work and so thjat she would be like the other children.

Tanhauser
Have you been to any social skills clubs? Are you getting any help to enable you to make friends?

Wilson and Star Thank you, I shall point DD in this direction when she gets home from school.

What Pag said, for me personally.

and it does appear you only read about HFA all the time but my DD can't speak..who wouldn't want to cure that?

(she is still of course lovely, but it would be a lot easier for her and us if she could speak)

Re this post

ASD is very cruel and hard to understand

It's is also brilliant:

'A partial list notes that autistics have, on average, superior pitch perception and other musical abilities, they are better at noticing details in patterns, they have better visual acuity, they are less likely to be fooled by optical illusions, they are more likely to fit some canons of economic rationality, they solve many puzzles at a much faster rate, and they are less likely to have false memories of particular kinds. Autistics also have, to varying degrees, strong or even extreme abilities to memorize, perform operations with codes and ciphers, perform calculations in their head, or excel in many other specialized cognitive tasks. The savants, while they are outliers, also reflect cognitive strengths found in autistics more generally. A recent investigation found, with conservative methods, that about one-third of autistics may have exceptional skills or savantlike abilities ...' Professor Tyler Corwen"

It isn't much use if my DD has all the superior abilities if she isn't able to communicate them!

"Whilst there are certain ASD traits that can be seen as positive - noticing patterns, savant abilities, seeing things from a wholly different perspective - these depress me further since, in isolation, these skills help no-one if the child has absolutely no social ability or the skills to get through day to day life."

What about if they bring the child himself pleasure? Isn't he the one who matters here?

"I know if my own biological child had autism I would love them."
Insofar as you imply that only biological parents can love children with autism you are factually inaccurate, and I'm afraid you do risk causing offence. I'm sorry you feel your step-son's ASD was to blame for the break-up of your marriage. But you cannot draw universal conclusions from that.

ReactionaryFish - I don't want to cause offence and I can only detail my own experiences with my step-son. I certainly do not want to draw any universal conclusions. Some children with ASD can be adorable and sweet - others not, in the same way that certain NT children are lovely and people are drawn to them, whilst others are a PITA and people avoid them.

One loves one's own children, that's pretty much a given. But it is certainly harder to be a step-parent (in any circumstance), and when ASD and a father who won't address the issues is added into the mix, it is nigh on impossible for a situation to work itself out. Hence the divorce.

Some ASD children spends their days self harming, rocking back and forth and are mute - do those activities bring the child pleasure? I have no idea. But what they do bring for those around them is enormous levels of anxiety, worry, stress and day-to-day difficulties. Which is why I wish, wish, wish there was a cure and a magic wand in the situation that I myself am in.

In the same way that you love your own child, you certainly have wishes, aspirations, hopes and dreams for that child from the point that they are conceived. And you love the unconditionally. That does not detract from most parents wishing that their children are born healthy and happy and the very real difficulties that parents and families face if a child is born with certain disabilities.

I'm well aware of the difficulties, as the parent of a child with ASD myself.
But those don't make me wish my ds was different from how he currently is. His autism cannot be divided from his personality, which as I've said, is one I find, personally, more congenial than those of NT little boys of his age.
you seem to want a "cure" to help you with your situation. This may sound unsympathetic, but I have far greater concern for your step-son who, from what you say, is not getting the help he needs. he is a human being in his own right, not merely an obstacle to other peoples' happiness.

I think this thread is one where it would be extraordinarily helpful if we tried hard not to assume that everyone else should feel as we do.

I absoloutely can divide my sons personality from his autism. His autism does not define him. That should not cause anyone to doubt that my primary object is his happiness.

I am interested to hear from people living with autism when there is no familial bond. I appreciate the insight into how he is perceived, and will be perceived by extended family. I see my eldest sons girlfriend trying to understand and bond with ds2. I would hope to be sympathetic to her efforts.

I think if you have a biological child with autism you have a stronger bond- that is clear from the opinions of the stepmothers on here. And that bond comes with an unconditional acceptance of the quirkiness of our kids, a willingness to see their struggles as strength of characters and their pain as if it were our own. If ds could take a pill to ease the negatives then I would welcome it. But have I been challenged by parenting him in a way that's made me fully alive and a force to be reckoned with- without doubt. Would I change it - probably but I would change him and change the person I gave become in parenting him. And I can't help thinking our life would be somehow less.

And it has made me realise that struggles in life are character building- had a pretty stress free life before.

"I think this thread is one where it would be extraordinarily helpful if we tried hard not to assume that everyone else should feel as we do."

the irony here is that works both ways.

im not going to apologise for not wanting to drastically "cure" my son of who he is and always has been, hiding thread now as clearly my own views are offensive to some. i got the "thanks" in the other post. thanks.

....and really not wishing to read anything else negative regards ASD as im stuggling with my own difficulties regards my boy at the moment,possibly feeling more sensitive than usual, so apologies for snippishness, pag.

but hiding thread now, i go in peace and am pledging now not to get involved in any more ASD related threads. so if you see me shout "oi vicar, what you doin? bugger off"

Thank you all for your personal experiences, it does really help. I personally dont think that dd un dx autistic spectrum is that severe, and even the paed said that she would be on the lower end of the spectrum, but enough to affect her socially, coupled with a speech and lang delay makes it difficult for her to express herself. A couple of days ago her TA said that dd had a good day, but all of a sudden threw herself on the floor and screamed for no reason, then took herself to the toilet and did a big poo and was fne. She must have had a tummy ache but could not tell her TA that she had one. The biting is prbably a reaction to her not liking the environment, too noisy and stimulating but she is not able to say.

My dh heard of a girl called Carely who Is severly Autistic, and one day typed that her teet hurt on a computer. She then started to xpress herself via the computer and it was amazing. I love positive experiences like this

YANBU.

I'm one of those TA's who gets bitten and pinched and deals with the tantrums. Our world can be a very confusing and frightening place for the kids I work with. I would love to be able to change that aspect of their ASD. I worry how they will cope longer term (still very young).

Carley is very big in the US and her and her dad have written a book

VicarInATuTu

Don't apologise for being snipish. I am well aware that we all find this subject tough. Ds2 is having a particularly hard time so we all bring our feelings for our children into our posts.

But, for the sake of clarity, my comment wasintended to work both ways. So no, there should be no irony.I was not speaking for a side. I was trying to suggest that this should be a sharing a views not an argument - the issue is too personal.

I completely understand and respect others feeling that their Childs autism is a substantial and important part of who they are. I respect and understand those who would not want a cure for their child or themselves.
My comments were about my son alone.

Please do not divide us into two groups. I am not speaking for a 'side'. I am not aligned with anyone who would object to your views. I speak only for myself. If someone is rude or offended or anything else that is their behaviour, not mine.