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?

[bunny2]

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?

[Davros]

Redsky, I'm sure we'd all like to hear more.

[onlyjoking9329]

well my son is in mainstream and i wouldn't say he has mild autism

[coppertop]

Bunny2 - My ds1 is in Reception at a mainstream primary school. He is doing really well. There are some areas where he is way ahead of his peers. When he first started there he was also quite a way behind in other areas. He is now catching up very quickly and it's not immediately obvious that he is in any way different to his classmates.

Each child is different but so far I've found that ds1 has been making improvements rather than getting worse. The school runs a sensiry integration programme for a number of the pupils with a range of SN and this has helped him a great deal. He rarely flaps anymore and is generally able to calm himself down when things get too much or just remove himself from the situation. His teacher had a terrible time trying not to laugh when my 4yr-old solemnly informed her "I'd better take myself somewhere else."

[coppertop]

You would think I'd have learned how to spell sensory by now.....

[bunny2]

coppertop, how can I discourage the flapping/hopping? People often laugh at ds (not cruelly, it can look comical) when he starts flapping and I dont want him to develop a complex aboutit.

[coppertop]

Ds1 seemed to just grow out of the flapping phase. It happened so subtly that I didn't really notice until the day ds2 started and I thought, "I can remember ds1 doing that."

The hopping/jumping seemed to decrease when I got ds1 a mini-trampoline. He did most of his bouncing and hopping on that. The sensory integration programme at the school seems to have lessened most of the general jitteriness. They do a lot of individual exercises with him but it's all set up by the SENCO so I don't know the exact routines tbh. I think each child has a different programme.

Does your ds hop/flap only when he's excited about something or is it a general day-to-day thing?

[bunny2]

He hops and flaps when excited. For instnace if I show him a new book he may hold his arms out, rigid, and open and close his fists a number of times. It is comical and we have, until recently, put it down to an odd and endearing habit. If he is telling me about something exciting he will run up and down the kitchen as he speaks. When we talk at dinner he might get up run in a circle and then sit down again. It is always when something excites him. Does this sound like ASD to you?

[Saker]

My ds2 (3.5y) is not autistic but has developmental problems as yet undiagnosed, possibly dyspraxia or possibly just a general global developmental delay. So I can't comment on the autism but wanted to say that the thing about running up and down or around in circles when excited and talking is really typical of him. It's as if he couldn't get his thoughts out without some physical activity as well. He often tells us little stories he has made up and if he is standing up he will run up and down the room while telling them. So I don't think that is a behaviour that is necessarily only associated with autism.

[redsky]

Hope I don't bore everyone to tears! I had my suspicions about ds from age of 1 yr. In yr 5 in ms school his teacher voiced her concerns to me - until then every teacher had said he's 'fine'. (we had moved a lot and ds went to 5 different schools in 3 years!) Iwas relieved to find someone supporting my concerns and we had already booked an appointemnt with an EP. The EP's report said ds' behaviour was quite odd, (she felt worn out by the end of the morning with him) and he had huge gaps in his understanding. His IQ was around 90 - 100 and he was a borderline case for ms schooling or special schooling. She refused to confirm or deny my suspicions about autism - said that a great deal more testing would be required - and (mostimportantly IM0) asked me if a full diagnosis would be for my benefit or ds??? Although I desperately wanted a diagnosis I KNEW that it was for MY benefit. She said a diagnosis of autism COULD become a heavy label to burden a child with. We had already considered moving him to a prep school but were desperately undecided in view of the earlier school changes (hence the app't with the EP). In view of the fact that we were already considering private schooling she suggested we follow that route - or alternatively a special school. I already had heard of a private school that I thought might be suitable - and after a lengthy interview there ds started there within 2 weeks. Right from the very first day he began to improve!! Within a term he was playing rugby -something I would have considered IMpossible in view of his intense dislike of 'touching' and understanding instructions, and being 'in a team'. He had an intense interest in atlases and making endless lists of countries and their capital cities and somehow over the next 4 years his teachers broadened this knowledge. He finished up with very very good CE results and he is now at a private senior school. His results at GCSE included 6 As and he got the Cs he hoped to get in his weakest subjects(maths and science). Now he is doing AS levels in French, German, History and Geography, and he studies Russian as a hobby!!! I would say he is still a little eccentric (how many 17 year olds would teach themselves Russian???) but he is certainly happy and as for normal....well....the autistic label would definitely NOT be appropriate now. BTW the only 'proof' I have that he ever was autistic is that I recently met by chance one of his prep school teachers and out of intense curiosity asked her if she thought ds was on the autistic spectrum. Her reply was 'Yes, of course he was!!' I cried with relief when she said that! AND she was not at all surprised to hear how well he was doing!!

I hope this posting encourages you bunny, davros and everyone else with concerns. The message is that 'with the right help' LOADS can be achieved!!!

Huge thanks for listening to anyone who has got to the end of this!!!

[Davros]

I don't understand Redsky, do you think it was down to choosing the perfect school for him or other things? Did he just "grow out" of it? There is something like 1% of children with ASD who will recover spontaneously without intervention (apparently, can't remember where this comes from but remember it from ages ago). Its great to hear that he's doing so well, LOL at the Russian! Is he really happy or more neutral? Like most parents of ASD,SN or NT kids, I don't care if my DS can't do lots of things as long as he's happy, unfortunately he got to a stage where he clearly wasn't but we're doing very well now and touch wood!

[redsky]

There's more I could say if anyone can bear to listen!!

Does anyone suspect their child has oversensitive hearing? I'm sure my ds did - but an audio(something) test could only test for deafness.

[bunny2]

redsky, that is interesting - I was reading the thread on whether or not to diagnose, it has made me question of we should proceed or not. The thing is, if ds remains in ms school he may need extra help if he is to reach his potential and the help is only available with a dx. He does sometimes exist in his own little world and I am worried that he will get left behind as the teaching becomes more didactic.

Socci, it does make me love ds even more, it just makes me sad for him. He laready has eczema and severe food allergies to deal with

Saker, ds does exactly that - I'm hoping the odd behaviour isnt necessarily autism but merely a mild eccentricity.

[redsky]

hi davros, thanks for responding. It is really difficult for me to say whether his improvement would have come about anyway - maybe it would. However I feel he were very lucky to come across such a fantastic school - oh and I forgot to say he had a lot of one to one tuition with one particular teacher. But all the teachers there seemed to have an understanding of ds's particular difficulties and their handling of him was faultless.
As for his emotional happiness....well....I do know that for much of his childhood he was desperately UNhappy (tantrums, anger, NO smiles, NO sense of humour, ) and gradually he has become more emotional. He now has a very dry sense of humour, like his dad; can laugh, certainly smiles and understands humour now. I'd say he's generally a fairly serious person. Perhaps 'neutral' IS the approriate word??? When I ask he tells me he is 'fine'!! If I ask 'Are you happy?' , he says yes! (with a 'Kevin the teenager' look IYKWIM). Teenagers eh??

[Tiggiwinkle]

Bunny2-My DS does exactly the same as yours.He flaps when excited-the more excited he is the more he flaps! He jumps up and down on the spot and runs backwards and forwards when he is tired. I suspect that he does it mainly in the safety of the home environment. None of his teachers ever mentioned the flapping until I told them about it-if he did it as much at school as he does at home, they could not fail to have noticed it. He is now aware that he does it and will tell you that he flaps when he is excited.
My DS coped well in reception but has found the transition to year one very hard.Until recently (as I mentioned on the other thread earlier today,) he just had a few behaviours, which like you we found endearing and just part of him rather than anything worrying.
However we have had a really worrying time for the last few weeks when he suddenly became unable to function due to his anxiety levels.(Literally overnight)He stopped eating completely-we managed to keep him going with milkshake and after a few days he stared eating the odd mouthful.(This was over Christmas and he would not even eat any of his sweets to start with!) He also became very worried about getting old and dying and was generally in a distraught state.
As I mentioned, we have no definite diagnosis yet either. I could not believe he might be on the spectrum initially. Like your DS, mine is very bright and has a very wide vocabulary. He is also very tactile and loving, and always has been.I have obviously done a lot of reading since ASD was mentioned, as we all do I am sure! I find the whole subject very confusing, as there seems to be so much overlap between the various conditions.
Its great to be able to talk to people here-as you say it is very reassuring to know we are not alone!

[redsky]

bunny, I can understand your concerns very well and my views on diagnosis have changed since I started on MN. I now realise that in order to get 'the right support' you have to get that diagnosis to tap into the resources available. All I would say is to try not to blab out the word autistic to everyone you come across - I KNOW that I would have been unable to keep my big mouth shut and so everyone who ever met my ds might have instantly labelled him as 'that autistic boy' and now it might be very hard for him to be accepted as 'normal'. As things stand he is accepted as 'normal' but perhaps a bit eccentric - which I think is far preferable. Tell me your thoughts.

[Jimjams]

I've come across one other child who kind of grew out of his autism (he's 6 now and still has some problems). I first met him at 3, when it apppeared that the diagnosis would be useful for him- and that he was heading for a diagnosis, but then something seemed to click and people now agree that a diagnosis wouldn't be suitable for him (although he still gets some help with his problems).

It is good to hear these stories, but I think its can be dangerous to assume that if yo do lots of the right things then your child will definitely recover and become normal (I don't think its wrong to aim for that- I just worry when I see parents who think that because their child hasn't recovered then they must be doing the wrong things and they keep spending and searching and never quite get round to accepting their child for who he/she is). I haven't met many parents like that-- although I think its common to start off like that (I did!) At 2 ds1 was so tantalisingly close to NT (and we were being told he definitely wasn't autistic) that I really believed that right diet, right intervention he could be NT. As it is he is like George and Sam in the book- he hasn't done as well as would be expected at 2 (I suspect that most people who knew him at 2 would be shoocked to meet him now tbh). But I don't think there was anything else we could have done that would have changed that- I think he's reaching his potential- its just that his potential (in terms of independent living) is a lot less than we hoped for.

I guess I'm just saying all anyone can do is as much as they can cope wiith and they shouldn't feel that its their job to "cure" the child.

Redski my friend with the boy who recovered has kept quiet about his early devlopmental history as well as she thinks for him it wouldn't be helpful to be thought of as autistic.

[coppertop]

Redsky - Ds1, ds2 and dh all have very sensitive hearing. At work dh has to use a Walkman to drown out the conversations of people talking at the other end of the open plan office. Ds1 puts his hands over his ears when a dog whistle is blown. Ds2 can be at the front of the house and still hear the back gate being opened.

[binkie]

I wanted to add a little thing - and sorry in advance if I'm repeating something you already know. Please bear in mind that the EP won't be able to (or, more to the point, shouldn't) give a diagnosis - just some guidance, and perhaps a referral on, or a report that goes into the wider diagnostic system. I'm only saying this in case you're anticipating the EP appt as a kind of huge watershed, and to be honest it can be quite anticlimatic and difficult in itself when you get the kind of inconclusive result that is more likely than not from an EP appt.

However, the EP's perspective can be very very useful to compare with your own and those of your son's teachers; presumably you are going to ask specifically for ASD type symptoms to be considered? (I recommend being very explicit that that is what you want assessed.)

[Davros]

Interesting that your view has changed since joining MN Redsky, does that mean we make sense or not?!
Totally agree Jimjams about the search for "the thing" that is going to make an ASD child NT. I do know a parent just like that and, apart from still believing that there is something that is going to drastically change her child (nothing has and he is nearly 11) I think its a way of avoiding facing up to it. Only last Friday she told me she's going to do chelation on him and I just want to say "please stop, give the kid a break". Mind you, another mutual friend said that she thinks this mum has AS!! Our mutual friend also can't bear to be around her with her son as she is on his back the whole time and she thinks its almost like abuse!

[redsky]

binkie, i agree with wholeheartedly with what you say about the EP's role.

Thannks coppertop for responding about sensitive hearing. I think my ds was particularly sensitive to rain falling (perhaps like machine-gun fire), bells ringing (school bell in particular), and some electrical equipment eg hairdryer, electric carving knife, hoover etc!

Jimjams, I agree with you too. I think I may well be guilty of giving false hope - I'm really, really sorry - you see I'm such a big blabbermouth! What I am trying to say is that SOME autistic children can respond very well to SOME techniques!

Also I must add that I still have huge concerns about the future for ds. He has come a long, long way BUT he is in a very structured and ordered environment at school (he boards) and it may be that he does very well at his schoolwork because it is a 'safe' activity and he is encouraged to do well at it. He is expecting to go on to university but I'm worried about how he will cope with the lack of structure there - endless free time to fill. Dh, as always, tells me stop fretting and trying to predict the future! 'He'll be fine!!' is his attitude. I wish I knew - and of course I never will because even when he's 40 I'll still be his mum and worry about him! So there is no 'ending' as such. IYSWIM.
Gotta go and start work - we run a pub (that's another story!)

[redsky]

Hi davros - yes, yes, yes, you ALL make sense! I LOVE talking to you all. MN has been fantastic therapy for me!

[Davros]

Redsky, you mustn't be sorry for telling us your story and about your son, its very intereseting. Have you had any advice about preparing him for university? Will he get any extra support there? Will there be some plan if things go wrong? The idea of preparation is a great one from our pov but I find it often isn't really needed or doesn't help, I just think it is will!
Hmmm, what is the pub called, The Flappers Arms?!!

[Jimjams]

Have you tried AIT redsky - for the sensitive hearing. It does help some.... DS1 has sensitive hearing as well and really cannot tolerate some noises (especially deep ones in his case).

Don't worry I didn't think you were giving false hope I'm just wary of how I started out and where we are now. I'm still very cross with a Radio 4 interview that was given quite a few months ago. They interviewed a mother who seemed to be saying that her son had responded very well and was very high functioning BECAUSE she had done x amount of therapy with him. I was cross as I'm sure the therapy allowed him to reach his potential - and of course every child should be given as much early intervention as possible (and it should be bloody state provided as well!! but thats another issue), but I'm not sure that intervention can alter a child's potential. In my son's case his potential is severely limited by the fact that he seems incapable of learning language - for whatever reason- we do of course try different ways to help him, and different approaches, and he has learned some slowly, but if the case is that for whatever reason his brain cannot learn (spoken in particular) langauge then his potential will always be limited.

I can understand why you are worried about University. Does he want to move away to go (just wondering whether he would entertain the idea of a local one- although that just postpones the problem I guess). There should be support available though the university- although I think the quality varies from university.