Not sure where to turn/what to do - probable ASD diagnosis

[lamandler]

Hello, new to this board but I can see how supportive and helpful you all are! My DS (almost 8) is going through the diagnosis/assessment process and a recent appointment with a paediatrician led to a diagnosis of ASD and possible attention and auditory processing issues.

I have known for years to be honest, but at every stage at school, was reassured and batted away. I thought I was being neurotic, which is probably painfully familiar...

We are still having assessments, and seeing CAMHS in a couple of weeks to start the LA process (paed appt was private). But DS is getting more and more anxious, being picked on at school, increasingly aware of how he is 'different' thanks to other children helpfully pointing it out at every opportunity.

He is in Y3, and his new teacher is keeping me at arms length and barely communicating with me, the SENCO is pretty hands off and the head keeps quoting processes and acronyms at me.

I genuinely don't know what to do - I can't bear that I have no control over what is happening at school, and am appalled by the the lack of compassion school is showing. On top of that, am dealing with his tummy aches, tics and poor sleep, and his bewilderment at how this has all escalated.

Help!

With my DD now 10 and just about to be diagnosed I know exactly what you mean about both appearing neurotic over the years and things escalating. I am lucky that the school have been good and actually probably realised the difficulties long before we did. But if they aren't helping properly they need a shove in the right direction. Since we've had the Educational Psychologist involved and now a Family Case Worker and the Community Paediatrician involved things have really moved along. I suppose I am suggesting use any and every contact you can to get support and push the school into doing what they need to. Good luck, I know it's not easy but remember it will all help your DS.

Well hopefully camhs will prod school into action. In the meantime have a read of the ipsea and Sossen websites.

You will learn a lot from the them about what school should and could do.

Also you can quote some jargon back to the head. He will like that ....

Thank you, I'll check out those sites tomorrow with a own and paper to scribble the acronyms!

I know it's all going to help eventually but I do think that families should be supported through it better, maybe that isn't school's role but it's all a bit cold and distant for something so emotionally difficult.

Something that you will get used to fairly fast is that in order to advocate appropriately for your child, you will need to be better informed and more prepared than any professional you see in order to get the support ds requires. This mostly means that you will need to be the one that identifies what support he requires, what he is entitled to, and how to get the support in question.

I do not applaud or make light of this state of affairs (as this is how kids whose parents can not advocate for them fall through the cracks of both the health and education system) - it is what it is. But sites such as those above, and advice boards such as this one, will give you a helping hand along the way.

You will be the one trying to knit together the strands of local provision to try and create a safety net for your son, not anyone else. There are strands of help and support available, but it is largely left to parents to work it all out. All that being said, if you can do your research and get them all organized, it is perfectly possible for children to receive all the support they require, and do very well.

First off, every time the HT quotes a process or an acronym, stop him/ her and ask 'what does that mean?' Don't allow them to baffle you with bullshit. Ask questions. And make sure you get the answers, and then head for tinternet and look it all up.

In a couple of years you will be the one providing advice to the parents of kids with new dx.

Be kind to yourself - it can take a while to navigate the bumps.

Good points lamamdler.

There doesn't seem to be any real help out their from the state. It's very short sighted.

I get no support from the school or nhs. I certainly know a hell of a lot more than the school do now.

If they continue to brush you off report back here and we can fill in gaps in your knowledge

Even if the SENCO is attempting to be hands-off, make an appointment to see him/her and the class teacher. Unfortunately you really need to be prepared to make a nuisance of yourself because they often will not do anything unless you push them.

If they do not know already, tell them the processes you have started and ask them how they are supporting your ds in school.

Thank you. Am reading the SEN Code of Practice from 2001 - is that the most up to date guidance for schools? Found it on a link on the SOS SEN website. I will give them a call too later to arm me for a meeting tomorrow....

Did any of you have the experience of schools involving your DC in solutions? DS has kind of clicked into gear with some ideas for how he can get more help in the class - he really wants to take it on now, which is positive in a way as he is engaging and hopefully understanding things better. But on the other hand, I don't want him to be disappointed if he can't enact the things he think will work (simple things like a safe quiet space when it's all too much, a few breaks from his table to stretch out and relax his muscles).

Agree about pushing, I will continue to do that. But how shit that we have to. I am sure you are all nodding sagely, I am not the first to discover this am I?!

The quite space and time out seems to something most schools will take on board (they are free to inn planner after all).

If they won't, ask why as really there can't be many good reasons why it's not possible