So tired and so down

yes it could be a genuine compliment,maybe i read too much into things,they took him off his iep academically now,so he is making progress which im really happy about,but i just wondered if perhaps she thought his problems then were down to immaturity? like i said i have a bad habbit of reading too much into everything.

Could this have been a genuine compliment?

Perhaps teacher is actually pleased with his progress?

I had to laugh! my sons report came out a few weeks ago! and on it it said "l has grown up a bit this year!" So teacher obviously thinks he is just immature! how the heck can you fight a battle like that?

Welcome back :-)

one thing to be aware of with aspies (e.g. Me) is that we can sometimes not be good at knowing if we are going to offend someone. We tend to think and then speak or write without wondering too much about how it will feel to be on the receiving end. (Technically this is the "social imagination" bit of Asd.

Hi guys im sorry im a little sensitive,i just have to say i am not angry,i just feel let down that all and if it comes across in my posts that i am angry its just the way they are written. xx

Hi mumof4boys772,

I don't believe any offence was meant - rather it was just a suggestion to help you in your situation. I'd encourage you to return to the forum if you're finding it helpful. 

I am sorry that i have offended you. I didn't mean to, but clearly i have, so i am really sorry.

I can see that you are trying to do the best for your son and i can see that you could do with some help.

I think your post is very offensive,telling someone to get anger management when you know barely anything about them? and judging by a couple of posts?

All i am trying to do is get my son the best help i can,i diddnt come on this site to have this.

I wont be back here.

Mo4b, you really are having a tough time. There really are ways of reducing your stress and managing your situation better. We can't make it easy and you will get challenged, as an autistic kids parent, on a daily basis but it can become easier than you are finding it at the moment.

It sounds to me, from reading your posts, as though you are very angry and upset about a lot of things.

A couple of year back i got into such a state that a "friend" of mine gave me a book on anger management. It turned out to be one of the best xmas presents i have ever had!

would you like to share with the rest of us what's on your mind? 

it's good to talk!

I havent and i will have a look into the nas support groups,its sad isnt it? if you have a pyschical disability you get much better treament than having a disability like this.

Its hard for me as i see my family falling apart right in front of my eyes and its like theres nothing i can do too stop it.

Have you looked to see if there is a local NAS branch in your area? www.autism.org.uk/.../branches-in-england.aspx

these are for parents and carers. You might meet some new friends who can provide some mutual support.

"Our branches in England provide a local hub where parents, carers and people with autism can get help, access services, support each other and meet other people and families in similar situations"

It is heart rending to see how hard it is for people to get help. It's a common theme here on the forum and the tragedy is that the kids are the losers every time.

Hmmmmm im not sure, it is odd though,i was watching a recording on a child of asd of utube before and i just thought my god my child is a heck of a lot worst and eyt that child has a diagnoses and yet i am having to fight tooth and nail to try and get him one so at least we might get some help!

Why is it you have to beg? we got the knockback from cahms first telling us to go on a parenting course and then i had to take my older child to casualy because he was having a panic attack with all the stress (diddnt know it was panic attack at the time) so i then went back to gp and she sent a strong worded letter as i sat there and broke my heart crying,then we got another referral and got seen.

I really need to start getting my bottom in gear and doing something and beig really pushy! because i am sick to death of being fobbed off!

There is a fine line between being a bloke and being diagnosable with ASD ;-) i got away with it for a long time (56 years) but in the end I'm comfortable that having a diagnosis is a good thing.

Thank you longman for taking the time and posting and for what you have said.

Recombinantsock im not sure, it not that i find it hard to make friends, i moved away from all my friends and family to give my children a better life, then i discovered i was pregnant and basically started work and not really had the time to make friends. I do however find it very hard not to be straight talking,most times i cannot think without speaking.  Dad is very routine bound i would say and finds it very hard to show emotions,he is strange at times,then again he is a man! lol i must say he does like his own privacy he doesnt like being invaded.

mumof4boys772 said:

We have no suppport network what so ever,we dont have any friends round here or family so yes we feel totally isolated.

Please don't take this the wrong way but do you think the ASD was inherited through you or your partner? I've traced my own autistic lack of social skills back through 3 generations on my father's side of the family. Do you and/or partner find it hard to make friends?

I saw a request from mumof4boys772 for me to look on this thread, hence my sudden appearance in this discussion.

My constant plea, frequently addressed to NAS (Moderators pay attention! LOL), is for sensory issues to be taken into account.

The problem is the diagnostic Triad of Impairments, designed to distinguish autism from other conditions, is then used irresponsibly to define autism. Sensory issues are at best mentioned as an aside. NAS is particularly guilty of this on their website, which they promote to health workers and other support professionals, and use as the basis of training packages.

So health workers and schools support only really know about the triad - communication - socialisation - obsessions. They don't know about the sensory issues. Hence the treatment for sensory sensitivity and meltdowns is medication that may in some cases be inappropriate, rather than adequate understanding of the causes.

Many professionals still think reactions to sensory overload are just bad behaviour. 'Pull yourself together' is about all they can come up with. Or diagnosing "immaturity problems".

We really have a fight on our hands to get sensory issues taken seriously, and NUMBER ONE obstacle to this is NAS. Hence my objections regarding the latest NAS Campaign - which is telling the Government about difficulties faced by people on the spectrum, which NAS doesn't include in its website and training pack explanations of autism! The right hand of NAS doesn't know what the left hand is doing, no joined up thinking (there's a few metaphors to puzzle over).

Sensory issues are hugely important. But nothing will be done while NAS and the professionals continue to ignore it.

As I explained yesterday on another thread, besides undue sensitivity to noise levels, sounds that hurt because of their frequency or modulation characteristics, or in certain wavelengths, and the unpredictability of sounds and sound patterns. There has been no research done on this. Yet this is obvious stuff, that can be explained and measured scientifically - maybe just too advanced for the self important experts.

Hence hand driers, hoovers, certain electromagnetic sounds, with certain frequency/modulation characteristics, or unpredictable start and stop are problemmatic, but computer sound feedback is OK.  

Hence supermarkets and crowded shopping malls are scary, invasive and unpredictable. Games arcades, an example mumof4boys772 used yesterday, appear safe because the sounds are familiar, consistent and predictable, and people are mostly static rather than milling around.

Until we get sensory issues taken seriously, thousands of people on the spectrum, and their families will continue to suffer, perhaps needlessly, because of the callous indifference of toffy-nosed know-it-all professionals who don't want to be pushed outside THEIR comfort zones!

Thank you so much,i will see where we can purchase one of these keys,i have and am ashamed to admit have had to leave him with a stranger while i went into a toilet while weve been out.

We have no suppport network what so ever,we dont have any friends round here or family so yes we feel totally isolated.

Supermarkets are the worst,not so long back my son was shouting and screaming all the way round the supermarket near the checkout he threw himself on the floor crying anyway i kept asking him to get up and he wouldnt so i told him anything he bought was going back and i took him out the shop.  My partner then stood in the que and there was a man in front of him and he was talking about the brat that was screaming all the way round the supermarket and my partner said that brat is my child and its not his fault and explained,apparently the mans face dropped!!!!

Last week we were in the car and he had the window open (we usually keep them locked) however as it was so hot we let him have it open anyway he shouted out something really rude to this larger lady!!!!!!

I will keep plodding on xxx

You are definately not making too much of it!  You are perhaps doubting yourself simply because you are exhausted.  Don't stop until you think everything that should be done, has been done. 

I too have a 7 yr old who sounds very very similar to yours.  We too were fobbed off for a number of years, given all sorts of diagnosis except for the correct one.  I knew he had ASD from a very young ageand I fought to get it recognised.  Nursery, school, they all agreed with me.  In the end, we saw a leading professional in the field who was shocked my son had not received a diagnosis of ASD years ago.

My advice to you is this - don't let the lack of a diagnosis prevent you from accessing any help and support that is available.  As I already said, a lot of the issues you are experiencing, we have too.  For example, public toilets with hand dryers - a complete nightmare.  I would suggest you purhase a RADAR key for use in disabled toilets.  You can then use a toilet without the fear of people using the dryer.  It took a while for my son to believe it, but it worked and we can now go out and about a little easier.  For those cringe-worthy moments with strangers in public, I use the NAS autism cards which you can hand out and have information regarding ASD.  I have found them useful on a number of occassions where people think I have raised a rude little boy which couldn't be further from the truth.  I wish I'd had them for those 'screaming in the shopping trolley' days when I was told he was nothing more than an attention seeker.  We do it all online now

Please remember, you're not on your own but it can really feel that way.  I found many of my old friends didn't really 'get it' and you end up being isolated.  If you can find a support group, join it - regardless of not having a diagnosis.  Best wishes

Thank you everyone just for listening xxx