Finally have a diagnosis - HFA

[brokenstones]

Hi all, I've been on and off this board for a few years - mostly lurking (and learning) and sometimes posting (under another name). I'd now like to join in properly if I can.

After a couple of years of indecisive paediatricians, long waiting lists, and a small amount of denial from me, we have just received a diagnosis of HFA for my ds (aged 6). I'd gone from desperately wanting him to be "normal" to desperately needing to know why he wasn't.

The last few months have been a hellish time of major meltdowns and school refusal, so I'm largely relieved that we can start to understand more and might even get some help. Though of course I'm sad too. So sad. And scared about the future. And worried I'm not strong enough or patient enough for this.

Also, I'm not feeling up to discussing it in real life, so hoping I can use this board instead for sharing and support. Thanks for reading.

[Ineedmorepatience]

Hi broken, it sounds like you have been through a lot!

I have a Dd who was diagnosed with Asd when she was 9, it took 3.5 years to get there

Whatever happens your little boy is still the same person but hopefully now he will begin to get the right support.

Be kind to yourself, even though you have been going through this for along time it will still take some getting used to.

This is a great place for advice and support so keep coming back.

Good luck

[Tambaboy]

brokenstones I know how you feel, we've recently been through the same with DS (6). But I have to say personally for me the feeling down stage only lasted for a few months and now I'm in the "ok, what can we do about it" stage and MNSN is great for advice, information and support. I couldn't have done without it.
Keep posting.

[brokenstones]

Thanks so much for your replies. I'm feeling guilty for not being more proactive about pushing for a diagnosis earlier - I've sort of known since he was 3 but was hoping his little quirks etc would disappear and that maybe he was just slow to develop socially... Hearing the diagnosis just makes me more determined to sort things out and get the right sort of provision for him but it's so hard to know where to start. There are so many things to investigate, not least a new school (his current one have been incredibly unhelpful so far and I don't hold out much hope that they'll be able or willing to offer him the support he needs).

I'm also now worried about my 3 yo dd who, although she has far fewer issues than her brother, does seem to share some of the same traits, and has some speech issues. I wonder if his diagnosis will make it easier to get some help (eg SALT) for her.

Tambaboy, how is your son doing? Has the diagnosis opened up any doors with regards to extra support etc?

Thanks again for your support. I'm sure I will be back with questions...

[Tambaboy]

brokenstones i didn't want to leave your question unanswered but we are camping in Wales at the moment. I'll try to get back to you as soon as i can.

[brokenstones]

Thanks so much Tambaboy - there's no rush. Hope the camping is fun (and not too wet)

[marchduck]

Hi brokenstones, sad and scared for the future summed up how I felt too. I think even if you know it is probable, it's still awful to hear the words.
Hopefully it will help with getting your DS some support for school. Have the school been supportive so far?
All the best to your DS and you

[Tambaboy]

brokenstones sorry for late reply, I couldn't find the thread!!!
Camping was good, thank you, we came back with a tan!
We got verbal dx for DS in May and didn't get report until mid June. We told school teacher and SENCO (he's alredy on SA+) and they have already asked for the Autism Outreach teacher to come at the start of y2 , we'll see how it goes and we might pursue Statutory assessment. In terms of help, not much really, a few OT appointments (he's got hypermobilty as well) and that's it so far. His SALT will continue to have input at the school. But I'm going to attend Ambitious about Autism courses and workshops in London starting in September and I hope to learn strategies , talk to professionals and get to know other parents on the same boat.

I've been reading loads including MNSN threads and learning new things everyday.

[sophj100]

Sounds like you feel some relief at having some diagnosis, so you can at least move forward. This is exactly how I felt... very sad, scared and wondered if I was up to the task but some relief at knowing that I wasn't just going mad.

Wish you all the success, I too only share on here and not in any group situation and it's all new to me. so good luck to you & your boy xx