Just got a verbal diagnosis of HFA for my son

[othermother]

Hello, we had Tom's paediatrician appointment today and he gave us a verbal diagnosis of Higher Functioning Autism which I was totally not expecting! I was sure he had some sort of tic disorder like tourette's, but he said that his tics were more like stims and that his behaviour was pretty classical autism.

So, I feel a bit odd about it all really, but I suppose it does make sense.

He's referred him onto a more local paediatrician who deals with autism and has also referred him to SALT.

Anybody else got any experience of HFA? I'm new to all this, so any help/advice/words of wisdom would be greatly appreciated.

TIA

Hello there!! My DS (3) has a recent ASD dx, so rather new to all this too. How old is your DS (you said in a previous post but I can't remember)?

Yes, my 2 sons have that dx. Take it slowly and be kind to yourselves. It can feel like a shock.

I'm thinking it is good that you will be seeing a paediatrician. We haven't been offered this, but I want to request a referral myself.

He's 5 sc13.

Nice to meet other mums with the same dx for their kids.

Milou2, who gave you your dx then? I first mentioned my concerns to my GP about Tom who then referred me to the paed who I saw for the first time today. I'm shocked tbh that he made a diagnosis on his first visit.

Everybody I know in a similar situation has recommended the NAS EarlyBird course, where they also tell you about things like DLA, statementing, etc.
I am thinking about schools for my DS, and wonder about a local school with a special language unit. Are your kids in MS school? I so wish they could start school a bit later...

Totalchaos mentioned that Earlybird course to me earlier... I might look into it.

My son goes to a MS school. I know what you mean about wishing they could start a bit later. x

My ds2 has a dx of hfa. He's 8 now. Take time for yourself.

Hi othermum.

DS1 (5.8) was DX with ASD in Jan although not specified other than as a Social Communication Disorder.

Our DX was from an Assessment attended by Paed, OT and SALT.

It's a bit of a shock to start with, when they tell you something you sort of already know, but the MNers on this board are a mine of knowledge and more supportive then you could think possible, so any questions just ask away.....

Welcome to the SN board

BR

Thanks everyone

It was a total shock to me cos i really didn't think he was autistic. He also explained tio me that many kids with autism have a history of bi-polar in the family, and I have bi-polar.

hello again! you might also want to have a look at the "outside the system" thread - think you will find that interesting too.

websites:-
www.nas.org.uk is the obvious one
www.donnawilliams.net - a fascinating woman/creator

for books - jessica kingsley press do loads of books on ASD/HFA/Aspergers etc, Tony Attwood is meant to have written a really good one on Aspergers

Martian in the Playground by Clare Sainsbury is good in terms of the sort of difficulties kids with HFA/Aspergers have with the school system/environment

I've got the Hanen Talkability book, I'll bring that over next time we come over - www.hanen.org/web/Home/HanenPrograms/tabid/79/Talkability/Default.aspx

I've also got somewhere the dummies guide to autism which you can have.

My 2 boys were referred by Camhs to a neuropsychiatry department, so I assume they were seen by a neuropsychiatrist.

My 2 boys were referred by Camhs to a neuropsychiatry department, so I assume they were seen by a neuropsychiatrist.

Hello again as well . I've posted elsewhere for you. Will add that if you look at the DSM IV or the ICD-10 criteria for autism you might find things fitting in that way.

hi my ds was dx at 3 with HFA he is now 4 and has come along way we have had alot of improvements ND A FEW MORE THINGS ARISE IN THE SENSORY SIDE OF THINGS SENSITIVE TO SOUND, CHEWS, ROCKS ON HIS CHAIR, oops sorry cant be bothered to delete and write again lol

but speech wise he now talks in sentences and has started asking few questions today in the bath i said play carefully he said to me the answer is no lol

he is much calmer now the speech has come along

i still have nbad days when he does but on good days its fab and his my little buddy

we go to sn group called snap BUT AS DS IS PRE SCHOOL STILL WE CAN GO BUT WILL HAVE TO BE HOLIDAYS ONLY WHEN HE STARts school sorry im on dp comp and all the keys are other way round lol

anyway at snapthey offer courses for parents as well as children so maybe see if you have an sn group of any sort near you

give yourself time to absorb and ask as many questions as you want im ok now its just the statement process stressing me out but i fully accept my ds dx now and its part of who he is

i do find alot of his problems that arise are sleep related or lack of it and his sensory needs and behavior worsen so we have melatonin as i find he has problems winding down he processes so many thoughts and cannot switch off

Cheers bullet, I read it

Bubblagirl, the sensory things are what I suppose led me to taking him to the gp in the first place...mainly his licking and touching f stuff. I thought they were just tics at the time. But he's also really keen on very strong flavours...he loves strong mints, raw garlic and onion and eating lemons.

As far as i'm aware Tom's never had any speech problems, though he does shout rather than talk quite a bit and he talks non stop!

Someone on another forum asked me if this was a proper diagnosis or a preliminary diagnosis...I'm wondering now if it was maybe just a preliminary? Though he was adament that tis is what we are looking at here. I suppose it's just playing the waiting game now for other appointments. I didn't even think to ask how soon it would be before his next referrals come in.

my ds is a licker too he forever has fingers in his mouth

if he knocks his arm he has to suck his arm or same goes for leg

glad no speech problems your end anyway

i would contact who ever dx and ask when next meeting etc would be if the dx is final etc you may want to consider getting DLA if you dont already

it helps to pay for any therapies you may choose to do

and again dont wait around for people ive learnt you get no where waiting you need to be chasing people up and be on the ball at all times if they think your ok unfortunately its easy to slip to the bottom of the paper work pile you need to remain heard

ds can talk quite loud but has learnt to talk a bit quieter if i ask him and his speech can sound rehearsed normally his remembering what someone has said and will say it how they did etc

x

Just thought i would say hi, i have a 5 year old dd1 with AS and a 3 year old dd2 with HFA, we have only had verbal dx's for dd2 and are expecting a formal dx next month.

Dd1 is very verbal and loud but dd2 is almost non-verbal but babbles a lot .

Dd1 comes across as a NT child but dd2's traits are more obdvious, she hand flaps and holds her ears a lot.

Is it possible that he may have AS? (he sounds a lot like dd1).

Thanks for all the advice peeps!

Hi Marne,

I've been googling away and am sure that AS sounds more like him, as he was always such a good talker. Tom does lots of hand flapping and wringing and stuff like that too(but then so do I...I kept having to sit on my hands yesterday at the meeting to stop myself).

Can I ask what does NT stand for please? It's probably blaringly obvious but I can't guess the meaning.

Totalchaos..thanks to you too! I'll phone the library and see if they can get hold of any of those other books for me x

i think NT is 'neurologically typical' ie not SN but i may be wrong

I have an 8yr-old with HFA and a 6yr-old with AS.

When my two boys saw the Paed we were told at the first appointment that they probably had HFA/AS but that they would still need a full assessment to be absolutely sure. Each Paed seems to have their own system though.

Thanks improvingslowly X

Coppertop, I think that's possibly what the paed I saw is going to be doing. He's referred me to someone in Fleetwood and he did say that their system was slightly different to how they do things in Blackpool, but he was adament that it was HFA. Hopefully once he's been further assessed they'll know more.

Not sure if this is of any relevance, but my friend's son has aspergers. They have just found privately an OT who specialises in sensory stuff and are doing exercises to help inhibited reflexes. v early days but think this is showing v v gradual improvement.
i am v keen for them to try gluten and casein free diet but not my child or decision...

othermother just noticed on another thread you said your ds hardly sleeps i feel for you there as my ds HFA his brain is always working over time and has trouble settling to sleep

it would be worth you asking you paed for melatonin ds has been given this its natural hormone so not harmful but its found in autism that melatonin is lacking in bodies which helps regulate body clock and tell when time to sleep

it doesnt keep ds asleep but i can get him to bed for a good time and found his sensory issues are alot less when his slept and its like having two different boys when his slept we can do so much together his tolerance for new things is good sensory issues lesson he learns new things

no sleep lots of sensory issues melt downs doent want to leave the house will sit in his room with curtains closed playing games

we also have small trampoline in his room to help with sensory issues his using this less now sleeping but has to have his rocking chair

xx

Hi bubblagirl,

I did ask the paed if thee was anything he could to help re Tom's lack of sleep but he just said that sme kids don't require much sleep and there's nothing we can do about it. Not much fun when even on a school night he's still wide awake at 1.30 am. I'm sure if he had more sleep he'd be able to function better during the day. We have meltdowns every day, lots of them, and it's so disruptive on the whole family. Hopefully the next paed we see will have a different view about lack of sleep and offer us some melatonin.

i would continue to phone up and say its not sleeping thats a problem as such its the ability to fall asleep

also say you know someone else who's child has HFA and also unable to settle asleep and has melatonin which has helped hugely with his melt downs etc

it really is a blessing he still wakes up some nights twice or more but easily settled some nights he may wake at 3 or 4 and be adamant its time to get up but still his behaviour is still better as he went to sleep at reasonable time he normally wakes 3 hrs after having it

it really has helped him loads though we were at a stage we couldn't leave house now were up and out every day huge difference his so much more responsive and has come along hugely in last 2 mths of having it can only hope they will repeat it for me as really dont want to go back to how we were

i just went straight to paed left voice mail asking for melatonin explained how he had trouble settling how i was so sleep deprived feeling ill and she bought his appt forward and prescribed it with no worries

fingers crossed keep on at them and lets hope you can get some too