Meeting with CAMHS today, they want to dx ds with HFA

[sasquatch]

Subject line says it really. I was expecting it but wasnt prepared IYSWIM. I'm a bit p'd off.

Sorry that its hit you so bad. How old is Ds?

Hi,

I know how you feel, my DD(5) got her Dx last month she has AS, even though you know what the outcome will be, there is still a little glimmer of hope that maybe they are wrong.

I does get easier i am just starting to accept it, How old is your DS?.

thanks stary, I am not sure what to feel, He is 12.
I cant get the pscyh to agree he didnt have language delay though.

Yes, I was kind of thinking "maybe I'm just overprotective/reacting" and they are going to tell me off for wasting their time.

I thought that would be aspergers then wouldn't it. I think some people class HFA and Aspergers together though.

I think its natural to feel like you are. My son was diagnosed with ASD in June and although I had done my research and knew what the diagnosis would be it was a shock that it came so quick and easily. Was also expecting to be told that I was paranoid/neurotic.

Dont want to cheesey making but I channelled that energy into seeing what I could do for Ds Ok I know it sounds very sick making. Sorry

Yes, I thought it would be aspergers. I have told them twice now his speech was not delayed. I will have to insist I think. But the psyc doesnt seem think it makes a difference.He did say it would be AS if his speech hadnt been delayed, and I say " it wasnt", am I being pedantic insisting on AS not HFA?

Setting up a meeting with school and more sessions with me to adjust and find out about helping ds and what it will mean to him, so they are actually being very helpful, I just find them a bit cold.

Thanks for reading and getting back, how old is your ds?

It doesnt have to be a delay- ds1 has a dx of HFA as he ahs semantic pragmatic disorder, thats her (our Aped) definition.

And really its all individual definitions! our school class DS1 as AS as they define HFA differently again (!), yet another one says its linked to wjether learning difficulties are rpesent- well fro ds1 theya re, for many they are not.

Its all individual definition in my experience, dont let the names and labels phase you

Oh and hgs- getting a dx can be hard.

Thanks peachy,
Ds doesnt have any learning diff. I asked if there was anything else they thought he should be screened for and they said no.
They gave me a copy of the report to okay or change details before they finalise it in a few days.

I suppose it is only a name. I just want ds to get all the appropriate help he can.

You've actually slightly more chance getting help with HFA than AS as a dx, if that helps? Certainly round here AS is clssified as not qualifying for SS services, whilst HFA does (if you can get the buggers to help but thats another challenge LOl...)

we rely on www.bibic.org.uk if you do struggle-t ehy're great with HFA. But they do charge sadly 9although they also help with funding if needed).

the national autistic society are a great starting point for any help, esp. immediately post DX

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Thanks tobysmum,
It seems so unreal, do you think I should just go with the dx they've suggested?
I'm too tired now, but need to ask lots of q's.

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Yes, it feels a bit like cheating. But maybe that is my denial coming into play.Also, I can already imagine people we know reacting with " ds ?, No !!! He's not autistic!!" If I were to tell them, which I dont think I will. He is 12 you see, I think people will find it hard to accept,including his school, blimey I am.
I think I want him to have a dx, but at the same time I just want him to be the same as everybody else, does this sound bad? Sorry.

Sounds normal- even 18 months post dx with ds1 I still think people think I am imagining it (despite a statement, near exclusion etc etcetc)- and as ds3 may never even get a specific dx I'm even worse there, which is ridiculous as he is fairly severe!

Give yourself acceptnce time. If six months down the line you feel the dx is incorrect, consider asking for a review; but do give yourself time to adjust first. I knew ds1 would get the dx he did but crashed abdly afterwards anyway, it can take time.

sasquash I understand what you mean and as a rule we dont tell people although we dont hide it either. I dont want people to treat him differently but at the same time he is different. I find it hard to know who to tell and decided that its on a need to know basis but if anyone asks I would tell them.

Hi sasquatch - sorry to hear about your dx. It can be a shock I know, especially as it was not quite what you were expecting.

It is hard when you don't necessarily agee with the dx too. I don't agree my DS has AS; I think he has dyspraxia with social communication difficulties. The thing that makes this hard for me is that is what the clinical psych. who saw DS said but the review team over ruled her despite none of them ever having seen DS and the OT not being there to put her findings to them.

I think though that part of the reason they gave the AS dx is that they think they are doing me a favour and I am wondering whether the same is happening to you. I wonder if they think he would get more help with the HFA dx. It isn't clear cut, the difference between AS and HFA, some say they are the same thing, some say they are different but I suspect anything with autism in the name may get you more support than AS.

I know it is hard to accept though. Does your DS know? My other concern is that since I am not happy with the dx for my son I am not happy to tell him that is what he has got.

I really don't know if you can challenge and change a dx although I suppose you are within your rights to ask for a second opinion.

I would wait until the dust settles a bit and see how you feel in a few weeks and what the implications are of the dx and then speak to somebody again with your concerns.

In the end so long as your DS is getting the right help, I suppose labels are irrelevant but I understand that it doesn't always feel that way.

ok, I'm getting good advice here, I can ask for a review later, It sounds as though I should take the HFA dx.
It had occurred to me that there was some unspoken help being offered with this dx, and I'm hearing this from you all, but also I'm such a stickler for "in principal I shouldnt lie". I'm torn.

They want my comments and approval this week.

Stary, Ithink am only going to tell people going be of help to him, as you say.
i havent even told family we are doing this assessment, not there are many to tell.
My sis is away on holiday at the moment.

Neicie, he doesnt know but he is old enough and bright enough to have a good guess. I do plan to tell him the dx they have given and what I think of it when I have given it time to sink in and discussed with Camhs.
So tired, not sleeping too well.

Is HFA a learning disability?

Not really, its a specific developmental disorder but again that varies- some kids thrive with a DX of HFA apart from the sopcial etc stuff, whilsyt my little lad struggles badly with reading, writing etc despite incredible language skills and an IQ way above average- so he has a LD.

Some pavces will call it a specific learning disabilty

Some places will separate ASD's out totally from the rest of the SN classifications

Most places will just talk about SN.

ASD's are covered by the Special educational Needs and Autism MA's at my Uni, but not the SLD MA. That seems to be more hearing etc.

BTW ds1 knows he has AS not HFA- when he was upgarded it seemed to awkward to re-address it, and it says AS on his statement anyway. But school deals with himsquarely within the ASD category, and thankfully- SENCO ahs just done the ASD course and seems to haev lots of strategies 9she bloody needs them LOL).

But outside ofschool, and the statement I slaved for, DS1 gets no support at all because the SS here dosn't count AS.

My ds had a huge disparity between verbal and non verbal reasoning and attainment in maths and english at 11+, and good language skills like yours. He is underachieving academically as well as socially. How does one go about addressing this once he has a dx?

Sorry, what are SS services?

You need to think aboput whether a statement will help- IPSEA are good on this (have a look at their website)- if you decide one will help, YOU go ahead and apply; school does not need to be invovled in that decision, too amny have aissues and try to prevent kids getting the help they need. There are various therapy programs out there, the trick is finding the one for your son, especially as he is older and not severe- we use BIBIC as they tailor the therapy to suit ds1 rather than addressinga reas where he doesn't need it- As ASD's can vary so widely those on the higher end of the spectrum can benefit from this imo. For ds1, we're addressing anger (a big thing for him), reading skills and the SPD. DS3 on the toehr ahnd is working with basic language, sensory awareness and self help skills such as undressing. Similar schemes are out there, many aren't available after 16 (a funding thing I think), so they would need looking into sooner rather than later for maximum benefit.

SS- social services - respite / school holiday clubs, he does have access to SN rugby and other activities- he loves the rugby- just not the in house stuff.

And remember that he may be entitled to DLA (disability living allowance)

Thanks, I will have a look at the Ipsea site after supper. Camhs are going to set up a meeting with school after the dx is finalised.
Your ds plays rugby? great! ds hates contact sports, he used to pick up the ball and run off with it if it came near him back in the days when he still thought he had to join in at football.
There is a lot to take in, thanks for all the info, and someone to share it with.

SN rugby= non contact rugby LOl