Please help I am panicking, feeling devastated and confused.

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HELP.


I took my sons to be diagnosed last week. I get told that I and my eldest are Aspie. THEN - it doesn't get mentioned in the typed report. SO - that means - NO help from correspondence school.

My doc agrees we probably are - the SPELD people say it needs a psychologist and Autism NZ says it needs a University assessment ($3000!! !! !) and my doc says she just needs SPELD to SAY so in writing and she can refer me to a psychiatrist because THEY are the ONLY ones who can actually diagnose Aspergers AND it will be done for free in NZ for my son IF she gets something stating he is suspected.

The correspondence school will ONLY help if this diagnosis comes in AND SPELD reckon that because I have done so well home schooling that unless he is failing everything they won;t help with what she has written in her report either (and my youngest son's report is incorrect according to him too!).

I have forked out hard saved money from the scant amount we have and NOW have NO help!

I do NOT know what to do. I cannot speak to them - I am in pieces, which means my husband has to now keep interrupting his work to try to deal with it - and she didn;t even OFFER to change her report so we COULD get him diagnosed....

What do I DO - I have had a 2mg Clonazepam and am STILL not calm..... My childrens' lives depend on getting the help - all this Temple Grandin stuff is great IF you get people who want to do more than just take your money and leave you drowning in an ocean of nothingness.

PLEASE - someone - I am falling apart here with worry and anxiety........every time I think we;re getting help - it turns to excrement......

The doctor may have not thought to offer, but did you ask her? Maybe explain it to her, and she can give you something on paper with her suspicion on it? Just to get the ball rolling. Or maybe there is an autism support place available to you that could speak on your behalf? Maybe you could ask the University if they have any options? If they say no, you are no worse off, but at least it shouldn't cost you to ask.

I have also found that people seem to be just trying to take my money at every turn. It is very hard to know how to even approach some problems these days. Too disabled to manage well, not disabled enough to get help. I feel like screaming sometimes.
Is there a reason you can't just keep schooling him yourself, if he doing OK?

I am really sorry I can't do anything more to help you.

she has to go on what SPELD say and they have left out the pertinent stuff. =( She can only refer when she has a proper report taht suggests referral....otherwise there's nada in writing and noone want that.

He is very bright - but has no sequencing ability - so is muddled - if no help - they will both drift in menail jobs that will bore them and they will not manage well.

Their potential to have a full life is huge. But they need the quallies to go on to Uni. And it won;t happen without the help.

To be honest - I have got to the point that, if hubby dies on the way home - I will dope the rest of us so this can all stop.

No - Im not just being dramatic. =/

I would bug the h#ll out of them to give you what you need in writing. Let your husband help you in this, as much as he's able. Remember that your kids live their lives in the end. You want the best for them, but they're the only ones who know what will bring them fulfillment and happiness. Never assume on their behalf.

I'm from New Zealand and recently got diagnosed. I never got a bit of paper stating the diagnosis and as far as I know there is no longer such a thing officially as an Aspergers diagnosis. It is now ASD (Autism Spectrum Disorder). As an adult with HFA I am fully self-sufficient and don't need anything other than the assurance that comes with diagnosis. Yes, I would like a bit of paper but thats a purely personal put-it-on-file type of want. In your case it sounds a lot more important. Is the correspondence school in some way critically important for the immediate wellbeing for you or your son? Also, why is there an immediate need to resolve this issue? has this process already been dragging on for a long time and you are now completely frustrated? I ask so that I can understand what is the reason for your anxiety? I can certainly understand that you don't want to go for multiple expensive sessions before something concrete is done.

If the need for closure is not absolutely necessary today and now and you just want to prevent huge psychologist bills, then stop going to the psychologists etc for a time until your mind and finances have settled. If you need closure immediately because there is some sort of deadline to sign up to the correspondence school (or some similar urgent need) then its a bit more serious. I am presuming in such case that the deadline is imminent; if any such deadline is for one month from now or longer, take some time out and get to a place where you can think clearly. You might simply be in a state of post-diagnosis shock? Did you suspect ASD before the diagnosis or has this suddenly been revealed to you? I was diagnosed with ASD in my teens and immediately repressed all memory of it for fear of social stigmatisation. It is only now in my 40-s that I finally came to terms with it and sought a re-diagnosis.

Also, what would the diagnosis change immediately? Other than receiving support from the government (which might be forthcoming for your child but is conspicuously absent in New Zealand for adults) a diagnosis is more of a formality than resulting in any earth-shattering immediate consequences. My view is that it is important to understand diagnosis as a small step in a lifelong journey and not an absolute bolt of lightning that renders your life utterly transformed. When diagnosed, I was left with a real sense of anti-climax, as if I had just been to the doctor and been told I had the common cold and I should just wait a few days to let it work its way out of my system. Of course, ASD doesn't work its way out of your system so that diagnosis has been very meaningful since then.

Whatever you do, take some time out if you can and recharge your emotional batteries. There is no way you can make good decisions while in a really upset state.

thank you. I'm passed copying point. I worry cos I really am hiding in a quiet place, unable to ask them....he is good, but he can only do so much.

BUT - I shall take on board what you have said.

4mg Clonazepam now....a bit calmer.

xx

Thank you all for your kindness.

I told my doc today I had found this place and felt like I was somewhere I belonged for once. =)

NZQA is holding off on what? They won't have autism-specific courses for binary computer programming; they wouldn't be concerned who did the courses as long as the meet the criteria. I but that is about the correspondence school and not NZQA. I can see that a particular delivery method would help someone with ASD.

I reckon write down exactly what the problem is and then the specific questions and results you need and then go talk to people. What I am seeing is that in answering my questions, I have more questions because it isn't clear to me. Maybe the people who can help you need clarification from you as I do? it needs a calm state of mind and i know thats hard but you really need to try get to that place so you can make progress. Your panic is probably the biggest barrier to progress right now because it is most likely affecting your communications with these people.

Hey, I know that I am probably stating the obvious. All the best and wish I could help more.

Hey, first thing: Don't panic. Easier said than done, of course, so consider this: Your sons already have the absolute most important thing anybody could have to be successful: They have family that loves and supports them. There are people here who were born before autism was well-known, grew up without a diagnosis, without help of any kind, but whose families loved them and supported them, and who have managed to muddle along pretty well and in general, have had quite decent lives. There are people here who are married with kids, who only realized they were autistic after their own children were diagnosed.

Having to fight the system to get your kids the education and therapy they need is an unfortunately common experience for parents of Spectrum kids. Wander over to the parents' forum, talk to some of them; they can probably give you some pointers.

And--well, it's only autism. Autism isn't a medical emergency; it stays pretty much the same. The best treatment for it will always be to create an environment where the child can learn and grow and become a healthy, happy autistic adult. Their brains may have developed differently, but they're healthy autistic brains. They can learn new things, useful things that'll help them get along in a non-autistic world.

Yeah, you're going to have to do some fighting, but that's not really the end of the world. In my experience, parents tend to be pretty tough when it comes to making sure their kids have what they need. You are a lot stronger than you know, and the problems you're facing are ones that people have solved before you. Not that it isn't going to suck sometimes, but that's what life does. Besides, the good parts are worth it.

Yes,agree with Callista 100%.Think too of those many different people who flunked school, generally dropped out and did what they did anyway. Mostly, people with real genius end up being acknowledged irrespective of what social institution they ended up in. Computer programming is renowned for being a raw skill where you either can do it or you can't. Mostly people who can do programming will generally do very specialised courses, often not through universities and their own natural flair leads them rather than some lecturer. In my case, I am self taught with regards to spreadsheets and can do some fairly complex Visual Basic programming. I didn't learn any of this through formal institutions. In my case I chose not to go into programming full time but I could have if I wanted to.

I think in this situation you must realise that your son's success does not hinge entirely on what happens now, or what you manage to do to help him right here and now. Do not take this huge burden upon your personal shoulders; it isn't entirely your responsibility to ensure your son's success and happiness in life. I think too that often as parents we think that us getting things right and making right decisions is inevitably the best for our kids. There is an equal opposite likelihood that our 'best' for our kids can actually be bad for our kids. We don't necessarily know what is good for our kids.

So, once again, take some time out and get your own mind in order so you can see clearly. This crisis you are now in will probably look really small in the future when you have the benefit of hindsight. If your son is good at programming he will be a programmer irrespective of what academic institution he ends up in.

Bless you all. I will take your advice adn pop in tomorrow.

xx

No - they provide initial diagnosis in order to then be passed to GP to be passed to specialist.

One cannot rock up to the GP with a bunch of labels and demand to see specialists. GP's rely on places like this to make the initial diagnosis ad go from there.

I'm not stupid. I research. I also have the backing of our Irlens lady who knows the process and is appalled at what has happened and the lack of care with our reports.

This kind of response is actually more stressful than helpful. Assumptions are never helpful.

Thanks to all others who provided some empathy and ideas. I won;t pop back incase I get this again.

Too much going on already without being treated like a stupid banana.

xx