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Ds, 4, is going to be assessed for autism, can someone reassure me his life is not going to be impossibly difficult if a diagnosis is made?

(73 Posts)
bunny2 Tue 18-Jan-05 12:44:40

I have just had a meeting with ds' teacher. She has had concerns for a while (I hav had a few mysefl) and wants ds to be assessed by the Ed Psych. I feel really upset by it and want to hide away, with ds, from the world and protect him from it. Please, please can someone reassure me, if he is autistic can he lead a normal and happy life?

Jimjams Tue 18-Jan-05 13:11:28

Well the diagnosis won't make any difference as to his potential (but you knoiw that anyway). What it will do is provide access for support for him- so that he can get extra help with the things he finds difficult- and will provide you with access to a strong support network.

Diagnosis from an ed psych isn't really worth much though- he will need diagnosis from a developmental paed (the ed psych may be able to provide access to this).

Feeling upset is normal. I've been thinking about ds1's diagnosis a lot recently- as ds3 is now 2 weeks old, and we were told hat ds was probably autistic when ds2 was 2 weeks old. I remember coming out of the appointment, dropping something and kind of ending up sobbing on the floor (and I'd suspected he was autistic for about a year- didn't make hearing it any easier).

heartinthecountry Tue 18-Jan-05 13:11:32

Hi bunny2 - I don't know a massive amount about autism so can't answer that part of your post I'm afraid but I didn't want this post to sit here with no-one answering it. There are loads of mums on here with masses of experience and fantastic advice re: autism. I'm sure they will all be around later.

Of course you feel alarmed and scared and protective. Who wouldn't. But (and we are always saying this on this board!) a diagnosis is just a label - it doesn't change who your ds is. Of course going through any kind of assessment process is going to be hard. But I believe and hope that at the end of it, if your ds does have difficulties, then having a diagnosis should help him get the support he needs and life should get easier not harder. I know that is so easy for me to say sitting here when I am not going through it.

I don't know if that will help at all - please keep checking back for others far more qualified to give you advice than me.

hugs.

heartinthecountry Tue 18-Jan-05 13:13:17

Sorry Jimjams - didn't mean to suggest you were 'no-one' - our posts crossed!

coppertop Tue 18-Jan-05 13:13:25

A lot depends on how far along the spectrum someone is. My ds1 is 4.5yrs and was diagnosed with high-functioning autism about a year ago. I can't say for certain what the future holds for him but I'm fairly confident that he will have an independent and (hopefully) happy life. The intervention he's had so far has helped him to make a huge amount of progress. There are some odd quirks to his language but nothing that stands out too much. His fine-motor skills have almost caught up with those of his classmates. He has gone from being unable to tolerate crowds to sitting happily in assembly with the whole school.

He will probably always need a bit of extra help with the social side of things but not much. He still takes things literally so may need help along the way to explain what certain phrases mean. He may also need some help with de-coding body language but other than that I think he will do well. He is very similar to dh (AS). Dh has a degree, a job and a family despite his own difficulties with social situations. I can see ds1 being able to do the same if he wants to.

No-one can predict what kind of life a person with autism may have (anymore than you can predict the future of an NT child) but being autistic doesn't necessarily mean that a person will never have a 'normal' life.

juniperdewdrop Tue 18-Jan-05 13:14:37

((((hugs)))) bunny2

You'll be in shock still hun and once you get help and support it'll become easier. My DS2 isn't autistic (I don't think?) but he's being assessed too for learning difficulties and I felt very sad at first, kept looking at him and wanting to burst into tears.

You still have a wonderfull ds no matter what. He'll get lots of help and with such a caring mum will be happy, I'm sure.

Kittypickle Tue 18-Jan-05 13:17:19

I can't help at all as I don't know anything about autism but just wanted to post something. DD has dyspraxia and hypermobility and the whole diagnosis process started just over a year ago when DS was just a few weeks old and I know what a shock it can be even if there have been concerns before. I'm pretty local to you and if you would ever like to meet up for coffee then let me know.

Tiggiwinkle Tue 18-Jan-05 13:32:53

Just wanted to say I know what you are going through. My DS is 5 and is currently going through the DX process.
In his case though I will find it a relief as his problems have gone from a few odd behaviours (handflapping, jumping on the spot and until recently some echolalia) to a more recent development of extreme anxiety which at times affects his ablilty to cope at all.
I just want him to get the help he needs in order to cope at school.

bunny2 Tue 18-Jan-05 13:47:55

Thanks everyone. I knew I'd get support here. Kittypickle, yes I'd like to mmet for a coffee - you can resssure me there is life after a diagnosis.

tiggiwinkle, I have read your thread - ds is 4.6 and his "odd behaviours" sound almost identical to those of your ds - he hand flaps, jumps from foot to foot and repeats everything (this echolalia is quite a recent thing). Did you have concerns when your ds was displaying these behaviours or did you only become concenred more recently?

Coppertop, what is a high funtioning autism?

ThomCat Tue 18-Jan-05 13:53:48

Hi Bunny, sorry your going through this. All I can say babes is that after the dust has settled on all this, and if they do 'label'him, then he'll still be your baby bpoy and with that label will come support. A label can't change him or the way you feel about him but it can change other people's attitudes when they have a name for his behaviour etc.

Keep in touch and let us know how you both are etc.

Thinking of you, it'll be okay though hon'.

TC xx

Tiggiwinkle Tue 18-Jan-05 14:08:21

bunny2-I was concerned about the hand flapping from the start. He has done it since he was a toddler, and my concerns were raised because my DS3 has dyspraxia and used to "flap". I therefore mentioned it at DS5s 3 year check and the health visitor referred him to the local child development centre.
He was initially assessed by a paediatrician (after a long wait!)who did not feel there was anything wrong other than some minor problems with fine motor control. He was referred to the OT who felt that DS5 DID have dyspraxia (which I did not entirely agree with as his problems seemed different to DS3 who has all classic symptoms of dyspraxia).
She referred him back to the paeds and he saw a different one last October.It was at this assessment that ASD was first raised.
I must admit I had not suspected ASD-until recently I did not know too much about it, epsecially not the higher functioning autism.
I think in a way I have been trying to convince myslef that all is well when it obviously isnt-as the major "meltdown" just before Christmas has shown.

Kittypickle Tue 18-Jan-05 14:16:01

Just to say I've sent you a CAT

FineFigureFio Tue 18-Jan-05 15:01:46

bunny2, you have been given great advice, just wanted to echo the diagnosis will help him rather than hinder and I hope you get the support you need.

Do take kittypickle up on her offer, she is a lovely woman !

coppertop Tue 18-Jan-05 19:03:27

Sorry Bunny2. I've only just come back to this thread. High-functioning autism is the term used where the autism is relatively mild.

happymerryberries Tue 18-Jan-05 19:09:11

As others better informed that me have said, ASD is a very wide spectrum. I have taught several children on the spectum in a mainstream school. I don't want to paint an over rosy picture, but many of them are doing just fine. They have problems to overcome, but a diagnosis can lead to the support they need.

And at the risk of falling into the ASD kids are 'special' cliche, I teach one child with ASD who is astonishingly bright, quite the brightest child in the year. He is already working at 6th form level at the start of y10. So like all of our kids there is a wide spectum of abilities. I hope that yo feel better soon.

JakB Tue 18-Jan-05 19:28:44

Hello Bunny2, you'll get lots of advice and reassurance here. I've got a severely autistic little girl who was diagnosed at 2. Just wanted to echo what everybody else has said- the dx doesn't change who your son is, it's just a label and it helps you get the input you need. But I wanted to reassure you that even though my dd is very severely affected (hate saying that but it's true), she enjoys her life and we all love her so much. Yes, it's tough and it's tough working out why she does certain things etc and sometimes I do fret about the future but it's OK. I felt both relieved and devastated after the diagnosis and also as if I had become a member of a new club, bizarrely, as I had been scrambling around trying to find out what was different about DD. Knowing what DD's difficulties are means I understand my DD alot more and that I have now discovered ways to teach her (a revelation!). This is the 'severest' picture. Your dsm if he is autistic, is much more mildly affected (although I know from my friend whose daughter has AS- aspergers syndrome, that 'mild' is a bit of a misleading word) so I suppose what I'm trying to say is it WILL get better. It's a huge learning curve and one that you didn't plan for but I am POSITIVE things will get better for you and your DS. Big hugs and lots of love, JakB

onlyjoking Tue 18-Jan-05 20:27:25

DX is a signpost and will point you in the right direction, yes its a difficult and unplanned journey, and at times i have felt i couldnt cope, BUT i have and you will too, one of the ace things i have found is that you meet some great people on the way, and you will not have to explain your child to other parents of children with additional needs, they are a fab bunch on here so keep posting.

Jimjams Tue 18-Jan-05 20:30:44

ah a signpost. onlyjoking was it you who said that to me years ago when ds1 was being diagnosed? It was one of the most helpful things anyone has ever said....... It's not a label- it's a signpost

redsky Tue 18-Jan-05 20:37:34

hi bunny, please, please please be reassured that ds can lead a happy and normal life. my own ds WAS autistic, although he was never officially diagnosed; but with the right support he is now a 'normal and happy' 17 year old. I'll happily give you more info if you want. Good luck !!

onlyjoking Tue 18-Jan-05 20:48:25

it may well have been jimjams, we do have a few signposts in this house

Jimjams Tue 18-Jan-05 20:53:30

ROFL- very helpful anyway.

bunny2 Tue 18-Jan-05 21:15:39

Thankyou for all your reassuring messages, it is good to know we are not alone in this.

I have so many questions ...

will ds be able to continue in mainstream school? He is really happy there and I'd hate to see him moved to another school.

He is 4 and 9 months, is is liekly that things will get worse or might the extent of his ASD be the odd behaviour he has now (hopping, flapping etc).

can he really be autistic if he only exhibits a few symptoms? For instance his language skills are excellent and he is very affectionate.


TIA of any more help

Bunnyxx

onlyjoking Tue 18-Jan-05 21:26:34

well he could do a split placement, suppose you have to weigh up how much support he will need for mainstream, then see how many hours he will get, which is in my experience less than half of what you hoped for, mainstream talk of funding all the time, it is a word i have never heard mentioned in SN school

bunny2 Tue 18-Jan-05 21:48:42

onlyjoking, would a child with a mild case (if there is such a thing) of autism be able to stay in mainstream school? Ds doesnt really have behavioural problems, just some strange habits.

happymerryberries Tue 18-Jan-05 21:50:40

I teach children with high functioning autism abd aspergers in a mainstream state school. Many of them go on to do well. I have one currently getting a*s in his science GCSEs

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