Got our diagnosis! DS HFA.

[ALMummy]

Feel so, so happy today. Think people I have told think it is strange that I am so happy about this but we have been waiting for months and I have been battling everyone and I mean everyone, around me for a couple of years now to accept this.

Have posted a few times before and at the final assessment the Dev Paed said he definitely had autistic traits but whether it would be enough to get a diagnosis remained to be seen. I came away so disheartened and scared for ds, wondering what help he would get if we couldnt even get a diagnosis. Today we got it. I just started crying when they told me and had to explain that it was pure relief. Now everyone has to just get on with it instead of denying it and accusing me of making it up. I know it is about DS and not me but that has been very hard.

School have been fab anyway but now we can get some sort of one on one in place. Can anyone who knows about all this tell me if there is anything else I should be doing? Thank you in advance.

I'm really pleased you got the dx Be prepared to have a bit of a low about this too though. My first reaction to ds dx was relief but the next few days that was tempered by my sadness that this really was real IYKWIM.

Do you get DLA for him? If not then its worth applying for that ASAP

No, dont get DLA. Are we entitled to it?

I know it is going to be harder than this but at least now we can get things started. I have known for about two years that he had it, I thought it was AS actually but it seems that with a speech delay it is HFA. So many more decisions to make now. We are going to talk to his school about flexi schooling, as he does struggle there at the moment.

If he needs extra support, help, supervision etc than other children his age then yes you can get it. I advise you do use the guides on the Cerebra website as they are invaluable in helping you fill out the complete pig of a form.

Also does he have a statement? If he's struggling at school its worth asking the LEA to do a statutory assessment. It helps if the school agree with you that he needs extra support but you can apply without their support.

Its worth calling asap as if you get awarded it they will backdate the payments to shen you called to request the form. If he gets it and is awarded middle rate care or above you can also get carers allowance. Also getting DLA can increase your childrens tax credits allowance.

I'm so pleased for you that you've finally been told what you're dealing with.

I would 2nd/3rd the idea of applying for DLA. It can make a real difference. If you already get tax credits you may get extra there too depending on what level of DLA your ds is awarded.

Echo dusty about being prepared for a low- when ds1 was dx'd (AS/ HFA, he has a bizarre dx) I was leased- vindicated, even- but ended up really depressed.

And yes. DLA. Also get on your Social srvices mailing list for sn sports clubs / events etc

Its good you have an answer now. Nothing seems to happen automatically. So agree with the others - ring up for the DLA forms. Perhaps contact the NAS and see if there are any courses you fancy going on - as most are not available prior to Dx. But really the next step is to look after yourself - I too got very down after the autism (not HF)Dx (still struggling a bit)- so eat well and do what you need to do to stay on top. You will need the extra brain power for the silly DLA form!

Thank you for your replies. Thinking about it this morning in a lecture and started crying from absolutely no where so I think you are right about the lows.

Thanks for the advice about the courses. Spoke to his school this morning and they say this will help greatly with the application for a statement now. I sort of assumed that it would be automatic now we had a diagnosis but I suppose you cant take anything for granted. He does need more support and assistance than other kids even down to smoothing his social interactions in the park - constantly on alert. I suppose I am used to it now. Oh dear just started blubbing again .

DH at least is on board now and has been reading up about it all day so thats good news.

I feel a bit like everything is different now even though I knew this myself yesterday. Having three experts confirm it has made it real.

Thanks again everyone.

{{{hugs]]]almummy

Sadly statementing is never an easy process and a dx is in no way a guarentee that ds will get a statement. Having the school on side will be helpful though. Apparently its better if you apply to the LEA yourself though as the school cannot appeal if they LEA turn down the request but as a aprent you can.

Good luck with it all x

That is a bit worrying dustystar. The school have already applied. If they are turned down can I apply again as the parent?

I'm sure you can almummy. Attilathemeerkat is the one to ask on mn about statements. With ds the school applied and I applied seperately as well (cos I didn't trust the school!)

IPSEA or SOS:SEN are both good for info and support with the legal stuff.