Here are some suggested organisations that offer expert advice on SN.
What is the criteria in the U.K for diagnosing autism at first assessment?(23 Posts)
I would have to say that I am astounded that autism, such a serious and lifelong and potentially devastating condition can be detected within the confines of a 45 minute session.
Ok my paediatrician only deals with autistic kids. she obviously knows what to look for. But half of the session was spent trying to calm me down and asking me questions. She didnt see my son playing with his friends yesterday, playing peekaboo and jumping all over the bed together and drinking from the same cup. She didnt see him playing peekaboo with me today or running away from me but constantly turning back to see where i was. She didnt see him "talking" to me in great earnest about god knows what.
Its amazing how a 45 minute interview devastated my life for four days. I woke up today though. woke up to the fact that my son is inteligent, charming, beautiful and is going to be a great man.
i sympathise with u, my DS who is 8 was diagnosed by 2 psychologists after a 90mins session, he is now awaiting further assesment,treatment. At first i couldnt believe it when they told me but thinking about it-they know what they are talking about. My sister is studying for a degree in child psychology and she told me that most of the time they make their diagnosis in the first 5 mins, what have they told u is the next step for your DS?
Hi Jenk. Next step is to come in again and talk to doctor. I was in a flood of tears and couldnt speak the first time. Have to arrange his speech therapy asap and get him into music and play therapy too. He dosent appear to need OT at the mo.
How old is your ds? My ds was seen about 8 times over an 18 month period by SALT and cild dev team before diagnosis as well as EP in playschool and home visits. However...after diagnosis...NOTHING. He is 4 in mainstream school, and gets no therapy, play, speech or otherwise. Its a post code lottery.
oh Midge, thats awful! In another thread I said that a friend of mine takes the following approach "do not accept NO for an answer unless its humanly impossible". I know that in some regions, the resources just arent there but I will give you an example of what I was going to do if there werent resources in my area (and still may do). I was going to start my own group and start to lobby. Everyone was telling me the same thing that there will be no one knocking at your door offering services. That may still be the case as my ds dx is very new and I havent learned the ropes yet. But, where i live there is no parent support group or group of any kind where information can be exchanged etc. I was going to contact all the parents I know with asd kids and start one, then lobby lobby lobby. (I used to be a lobbyist many years ago).
If you write a letter in your local paper and ask people to contact you who have asd kids I think you might be VERY surprised at how many responses you would get.
However, if there is any money to be had, be sure you keep your ideas under your hat for fear of being expropriated by "community workers" looking for new funding ideas. Sorry to be so cynical but that seems to be the way things are now.
When ds1 saw the Paed for his first session (about an hour) she asked us what we thought the problem was. When we said autism she said that she agreed but that he would need a full assessment before she could give the full written diagnosis. Ds1 spent an hour with the OT, an hour with the Physio, and the SALT and Psych shared a 1hr slot. On top of that they also looked at reports from his pre-school and home visit reports by the EYIS. It was very thorough.
I would've thought it would've made far more sense for the Paed to refer your ds for a similar kind of assessment but, as usual, it all seems to come down to resources.
DD's assessment took about six months with several paed appointments plus SALT surveillance.
Ds' assessment took nearly a year from first visit to official dx. We had 2 appointments with the paed team, a private paed report and input from his SALT sessions. The paediatrician, the SALT and the specialist SALT all visited him in his nursery to observe him interacting with other children.
The paediatrician told the nursery manager (who then told me!) that the worst part of her job is telling parents who are unprepared for the dx - she finds it very difficult.
Mamadadawahwah, where I live there is a good parent support group and I've found it really helpful.
So far we have seen the clinical pyschologist twice about Ds2. The first time she didn't think he was on the autistic spectrum. The second time I could tell she was beginning to think he was and part of the reason was because she said "what do you think is wrong?".... I think it must be a favourite way of putting it. I rather put a fly in the ointment by saying that I didn't think he was autistic!
Anyway we are being reviewed again by her in August. I don't think we will end up with a diagnosis of ASD because not enough of the other professionals (including the paed) involved agree on it. But I think it is unusual to diagnose in just one session especially with younger children and they like to see how things pan out.
Socci - The SALT referred ds1 to the Pead. There was a 4mth wait for that initial appointment. The full assessment was 4 months later but all done in a single week so it wasn't too drawn out. At the end of the week we got the written dx. The biggest wait was when we had to wait a year to get SALT, and then at the first session the SALT made the referral to the CDC.
With ds2 it's been a nightmare trying to get the dx in writing. We saw a different Paed this time and at the initial visit he agreed that it was ASD but that we still needed the full assessment. The assessment went well and the pros and the Paed all agreed that ds2 had all the traits. Unfortunately for us he wouldn't give the dx in writing and has said that ds2 will need to be reassessed when he's 3. It's left us in a weird position because the SALT, OT, EYIS etc aren't technically supposed to refer to him as autistic so each conversation goes along the lines of, "XYZ works well with autistic children...erm...I mean with children like <ds2>". In private conversations they all tell me that they are certain that ds2 is on the spectrum but can't put that in writing anywhere.
Quick Hijack. MMDDWW, you say there is no ASD support group in your area, did PAPA not fit the bill?
I thought PAPA were meant to be really good? I've pointed my MIL in their direction.
so please tell me if they're no good as I want MIL to get "good" info (its taken her a long time to get to where she is now- don't want to spanner it!)
That's why I want to know, so I don't tell other people to get in touch with them if they're no good, but will still suggest them if they are iyswim. Get you MIL to do a reccy, heh heh!
I believe there is an organisation in NI that is associated with the NAS but is not an NAS branch, not sure, can't remember......
Living here in N. Ireland, I have already encountered three groups which provide support. After attendance at one Papa meeting I felt that it was not for me. To be fair, they provide very good resources and information but on a personal level I found them of no help at all. This is my experience, others may think differently. I live outside of a main town so there is nothing where I live per se but there are other groups in Belfast which I have contacted. One in particular which is an ABA centred approach type place, I found reprehensible, parochial and far too evangelistic for my taste. Again they had lots of info, but were intent on the ABA program being the be all and end all with little opportunity for differing input from the members.
Finally the NAS does not have a branch as far as I know, in Belfast. Funding for it was taken over by Papa. There appears to be a power struggle between groups and approaches.
Barnardos is here which is fantastic. I dont have a bad word to say about them. We would travel the length and breadth of Ireland to work with them.
Hi mamadadawahwah, I have followed your threads with intrigue, I am really encouraged to hear what support Barnados have offered your child, as I have never heard of any input from them specifically for ASD children.
I am sorry you meeting with Papa was disappointing, how long was the meeting? do you think you would benefit from more research in this area eg. speaking to more families in greater depth who have used their services.
I am very confused and shocked as to why your very limited experience of the ABA centred approach is reprehensible and parochial, I am an ABA therapist and have an ASD child, and ABA has made such a huge difference to my own child and the lives of the children I have worked with, in fact I would describe the ABA techniques I use as the complete opposite and have more of a holistic approach. Perhaps you could enlighten me on the specific opperants of ABA that have lead you to make this assumption?
Do you think your ds would benefit more if you took a step back and took more time in researching the right input for him? I completely understand the feeling of urgency to do something proactive immediately after a dx but have to say I am amazed at how many interventions you have looked into and dismissed in such a short time.
No I dont discount ABA. We use ABA as adults in our lives every day. What i discounted what the particular group in N. Ireland. Maybe you have to come from here to understand the political matrix of charities and community groups. Some are evangelistic, some are politically motivated and some are very very insular. Some are fantastic too. Like Barnardos. I havent discounted anything yet cause i havent tried it yet. I like the idea of floor time and really like the idea of RDI.
By the way, the floor time proponents will discount Lovaas, current research (allegedly lacking real evidence) etc. I have read ABA proponents doing the same thing re: Greenspan. So as someone who has not yet engaged either method seriously, its hard to know where to start.
The reason ABA proponents will discount Floortime is because there is NO evidence for the effectiveness of floortime whereas there is for ABA. To me its always been as simple as that. It isn't about belief or what I, as a parent, like the sound of, its a simple calculation of how much evidence there is for any given intervention. That doesn't mean that other methods can't be applied. To me the important thing, whatever else you look into, is to decide how to TEACH and EDUCATE your child. No diet, music or supplements are going to be worthwhile unless they are helping with your child's ability to learn. I also wouldn't be put off by a set of people, they are not the methodology, just ignore them if you don't like them.
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