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New, scared and so many questions!

theaword

Hello there

We've just had a diagnosis of HFA for our very nearly 3-year old son. He's had/has very slow speech development and some other classic symptoms (he didn't ever point or hold out his arms to be picked up, is very anxious and gets cross very easily) but he also has some very typical/normal behaviour like he has good (ish) eye contact and he's quite happy to engage with others a little. 

Since diagnosis (only a month ago) all of the pieces of puzzle seem to have fallen into place and we're seeing so much more typical autistic behaviour - probably because we're looking for it. He's getting really entrenched in his routines, he's freaking out in crowds, he's biting his nails all the time and he's slowly knocking items off his 'will eat' list.

Obviously we're still getting to grips with the realisation of the diagnosis but I'm now scared he's actually getting worse before our eyes. Does this happen? He was always a 'slow burner' so we haven't seen him lose any previously acquired skills yet - he was just really slow to pick up stuff in the first place but it's always been an upward trajectory if a very slow one. But this past few days he's been a bit poorly with a virus and I feel that he's starting to lose some of his memory/speech skills. Is 2 (nearly 3) too young to get a 'high functioning' diagnosis? Could it be classic autism just starting to show itself now?

Also (as we haven't seen anyone since diagnosis) what should we be doing next? It feels so helpless just to sit around thinking about it. I feel sure there's something we could/should be doing at home to help him? We've read loads about autism and the many therapies but some are crazily expensive and never going to happen. We may have managed to get ourselves on an Earlybird course (long story as there's not one running in our area) but that's not until April so can anyone suggest stuff we could be doing now to help him now? 

Any ideas and suggestions would be sooo welcome. It feels good to be telling someone all this. 

Thanks :) 

 

  • you know something leapt out at me in your post..your said he's been ill with a virus and that will knock most kids sideways for a week or so and it could be why he seems worse when your just seeing the effects of the virus and he'll rally around in the next few days to couple of weeks....right now the thing to think about for yourselves is your in a bit of shock that you've been told your son has autism and your automatically going to start seeing the signs of it..it's kinda wierd that way whenever you get told someone you love has something wrong you suddenly start to notice all the telltale little signs that were always there but you kinda didnt really register them as being there so dont worry or panic about them

    as said unless you get advice from a trusted source i'd avoid it like the plague as you dont know if it'll help or hinder, and some are simply money makers for companies...it's kinda like Pampers in a way everyone says their the best etc i found Tesco's own brand just as good and actually a better size fit and a lot cheaper...if you follow my point it's their saying aww use this it'll help loads but only ours are the one that works best etc

    love your idea about the "diary" of progress that's an idea i think i'll borrow and use myself for my son and daughter

    not sure where you'll stand with the DLA side of things at the moment you may have to wait until he's older and his autistic level can be fully assessed and so on a lot of people with autism live full rewarding lives and you wouldnt even know they had it unless they told you kinda thing

  • I have two sons, one Aspergers and a three year old who has just been diagnosed with Asd. I requested  a broad diagnosis because of his age...

    Depending on where you live there are support groups which you can get into contact with. In leicestershire we have Memphis who provide a family outreach worker. You should be able to get advice on how to contact such services from either your local council or Health visitor.

    Have you applied for DLA for your son?

    Martin

  • Christal12 - thank you so much for your amazing long reply. Cannot tell you how lovely it was to see that there today. It's such a relief knowing there are others out there who've been here before us. Your message made me feel so much more upbeat about it all today - so much so that I started a notebook of all his strengths and milestones so when I'm feeling a bit scared by it all, I can remind myself of all his brilliant qualities and see just how well he's doing. Thanks so much again. xx

  • hi, welcome + try not to panic!   He's still very young with a long way to go with his development.  It's good you could be on an early bird programme. You've got a lot to come to terms with.  It's early days + you need time to adjust.  As you say, you're looking for the autism all the time - being very sensitive to it. Remember your son is an individual 1st + foremost who also has autism.  There are many therapies - a lot of them are money-makers for companies + are unproven. Some are worse than unproven.   As you've read a lot I think you now need to take a bit of time to seriously consider all the stuff you've read.  Try to stick with the "tried + tested" which can be found on this site via the home page.  Also there's an organisation called Research Autism which investigates various therapies + gives them a rating.  It's worth looking at their website.  Don't be conned by some of these organisations which promise amazing results.  You son could be suffering from the effects of the virus - being poorly cd knock him back a bit.  Has anything changed in his life recently which might knock his speech/skills back a bit?  My son once lost all his speech after we'd both had a particularly traumatic event which resulted in a lot of big changes happening quickly.  When things settled down again he returned to his usual self.   There's all sorts you can do right now. You'll know from your reading.  Getting a daily routine for him which he understands + hopefully enjoys will help a lot with any anxieties he may have.  You can use PECS to help him with his routine.  Have you identified any sensory issues such as certain noises, textures, tastes, smells etc which may cause him distress?  My son has a few issues with certain noises but no other sensory issues as far as I know.  Also what does he enjoy doing?  If he has activities he likes then that's a way to enter his world + expand that world.  Could he be picking up on your anxieties?  When we're anxious it can change our behaviour a bit.  Others will be along soon to give advice + support.  Remember you are not powerless.  I wd ask the paediatrician and/or any others involved in the diagnostic process if there are any services for your son now he's diagnosed, such as nursery, speech therapy etc.  Also you shd request a statement of educational needs in good time for when he starts school so he can get the necessary support in the classroom.