Had a verbal dx

[claw3]

of autism on 3rd of this month, assessment team will be planning a MD meeting and giving official dx very soon. They just need to decide where abouts on the spectrum ds is.

There has been lots of talk of Aspergers or HFA. I have heard that these 'labels' are as good as useless when it come to getting help.

Anyone have any experience, pros and cons etc?

Sorry to hear this you must have mixed feelings.

I think the important thing would be to get the EP to assess him fully so you know what his strengths and weakness's are education wise so you can work from there rather than worry about the label to much now.

I had private EP assessment and he has been identified as a 'gifted learner'. Which is not very helpful. Academically he is not behind.

Most of ds's difficulties seemed to be linked to sensory, self care and anxiety, phobias etc.

For example he finds getting dressed/undressed painful, he says it 'burns his skin' which in turn creates a lot of anxiety around getting dressed/undressed. Extremely limited diet and food phobia, again creating lots of anxiety, he wont eat/drink without prompting. Seems to have limited sensory awareness around toileting and soils himself. Self injurious behaviours, speech and communication problems, finds it hard to 'fit in' socially etc, etc.

Academically he is probably is high functioning, but in basic daily life skills, he finds it hard to cope.

Have you had him assessed by an OT?

Or SalT for his auditory processing?

I'd personally be looking for a mroe general dx of ASD, I think that will be the dx we see for the next few years (and then proably a gradual understanding of the different types of syndrome getting a label of ASD atm, though that's the view of my old Prof not me LOL- think he's probably right though).

But have a look at local provision as it is a mixed bag; for example an AS dx is currently barring us from the SSD input we badly need, but is the only DX accepted by the LRC that we badly want him to attend in yr 7.

DS3 is HFA with a less able presentation and his ASD dx covers that variability I think. Kids don't always fit discrete categories no matter how much we wish they would to cut down on variability

Yes, OT assessed in 2008, long story had to make an official complaint about her report and get it withdrawn. Different OT is going into school to reassess on the 3rd March and write an updated report.

SALT has written a very good report, highlighting difficulties such as no concept of time ie before or after, confused by instructions and explanations, sequencing difficulties, limited output involving quite simply sentence structures, often with muddle ideas within them, conversation skills quite limited etc.

I suppose what im asking does this sound like HFA or Aspergers?

And yes, OT assessment would be my recommendation- someone with a speciality in SI (sensory integration) as a preference.

If monmey wqasn't an option I would be considereing teh dyscovery centre as I know their OT and she lectures on my course (I don't know how many they have, this one is Sally).

Claw the HFA / AS q really does copme down to did he have a language delay.

There are many people seeming to deal in variations but that is the true diagnostic difference.

Peachy, yes he did, HV referred to SALT for 'jargon' at 2 and half year check. He has kind of continued with the jargon, only using real words (often rambles on, using real words, but not actually making sense) iyswim.

At last assessment i was told he was definitely on the spectrum, its just a case of deciding where.

Now, jargon or actual chronological delay?

DS1 has lots of semantic and jargon issues but no actual delay (quite the reverse in fact) so is technically AS even if presents more in a more demanding manner than many ASD kids I know who are HFA

Whereas I also know of kids who had a DX of asd for a language delay that has now cleared and who present mildly but that is their DSM correct dx

Peachy, although he was referred when 2 and half, they did nothing, other than send me work to do with him at home. I didnt have mn then and was totally naive about SN. I again had to make an official compliant to get him assessed.

1st report states residual difficulties producing a few sounds ie l as n, blends br, pr and tr released from the back of the mouth as kr or gr, as well as r which continues to be unclear. It doesnt actually state chronological delay, but is this what it amounts to?

Also the 'quite simply sentence structures, often with muddle ideas within them', although no longer uses 'jargon', he often talks off topic etc.

At 2 and half years old, i would say he had both 'jargon' and speech dealy ie pronouncing sounds.

If the report says speech delay tehn technically i'd expect a dx of HFA

but

it sounds a little vague as to what type of SD was present so again that would defnitely make me go for the ASD dx.

AS is probably being phased out in 2012 anyway according to draft DSM, I personally wouldn't want an outdates dx. So that narrows it to HFA or ASD, really. My guess is that all the SSD's that have been barring service access to kids with AS will start pointing towards HFA, and ASD will at least not rpovide them with the ammo to refuse until they have actually met you IYSWIM.

So he has difficulties in recipricol conversation and Speech sounds? I think regardless of how academic he is communication is still an educational need as are his sensory needs.

Peachy, it doesnt actually say speech delay, im just assuming that is what it amounts to.

Reports does say mild word forming difficulties, difficulties in understanding language as well as any specific difficulties with reciprocal communication. Difficulty understanding pronouns, cannot label emotion based vocabulary and seemed confused by it.

He is able to respond to simple questions about what is happening but finds it more difficult when these questions involved any kind of inferring or deducing of information. Specific difficulties with vocabulary and often referred to things tangentially.

Has some residual speech sound difficulties with blends and more complex high level sounds. However in the context of the difficulties he has had as a younger child these are not felt to be particularly significant at this point.

Wasup, yes difficulties with reciprocal conversation, as above.

I suppose what im asking, is if they want to label him with HFA, given his difficulties is it a true reflection of his needs?

Whatever the label his needs should be specified and detailed in reports with interventions needed to meet those need.

Wassup, totally agree. The 1st SALT is specific about what help ds should get. He gets 30 minutes of 1:1 TA assistance a week.

I dont feel that is enough and this where the label comes into play, i am worried hfa will = it is enough.

In theory he should have his needs met with or without a label, in reality im having to fight to get any help and i dont feel a HFA will help.

Unfortunately labels do seem to be extremely important when asking for help.

I think they are aiming at giving a HFA or aspergers dx, i would like a dx of ASD and was wondering what i need to point out to them to get this.

I dont think HFA reflects ds's needs, he may well be high functioning in some areas, but is not in others.

Ive come to view it as some sort of business arrangement now Starlight and have tried to distant my emotions from it. Sad, but keeps me sane.

Thanks Starlight, i have written that down. I have also recently applied for a statutory assessment and was worried about HFA meaning less help.

I couldnt care less what they label him with, im more worried about getting him the help and if ASD = more help, thats what i want.

Most definitely Starlight to me, he is my little boy. To them he is just a number, they forget there is a little boy in the middle of all this and i have to distant myself personally from that or else i would be a emotional wreck!