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Have you ever had a wrong diagnosis of autism for your DC?

(52 Posts)
tiredmummyoftwo Wed 03-Mar-10 06:40:05

DS (4.7) was diagnosed at 2.5 with classic autism. He showed most of the symptoms if not all at that time and thereafter. In fact, not until recently we had any reason to doubt the diagnosis although it was clear to us at the time of diagnosis that it was not classic autism, if anything it was HFA. Recently since DS turned 4, things have taken a dramatic turn. His speech progressed to the level of a 3.6 years old from 18 months in the space of couple of months. Suddenly from last week he is able to answer questions about the past. He has suddenly become social, behaviour changed, eating everything for the last 6/7 months (he only used to eat yogurt). He still have speech delay and he is still behind from his peers. In the last 2 months, his ABA therapist changed his programme 5 times as he was suddenly gettiing all the concepts in one go. Now the people involved with him (all the professionals plus school) saying-it's speech delay, not autism. Has any of you experienced this? Have your DC suddenly recovered from autism?

JollyPirate Wed 03-Mar-10 06:58:41

Hello, my only experience of this has been in my role as a HV. I saw a little girl who was diagnosed at 2.5(like your DS) and at 4 suddenly progressed with speech and language. The nursery she attended was astounded and a year later it was deemed a speech and language delay and not autism. She is in mainstream school now and doing

sodit Wed 03-Mar-10 07:59:54

ds1 (3.6) seems to be doing this now was told he has verbal dx of asd not classic autism though. Eventhing is so different about him - he eats all his dinner now tries new things without batting an eye lid even stuff kids hate like cabbage last night.
He tells me what he did at nursery I seem to have proud mummy moments quite often now. Yesterday we were in the car and he told me (in his version) ds1 and ds2 hold hands and I lokked round and they were both holding hands brought a tear to my eye.
He is social in most cases things like drs he doesnt like. He is helpful at home and notices if i am upset etc and tries to make me laugh.
I have a thread about whether to get him dx or not at the mo as he has changed so much grin

Marne Wed 03-Mar-10 08:23:50

Dd1 has a dx of Aspergers which i sometime question, i often think she has Dyspraxia and not AS. My GP has recommended that we get her dx removed when she's older. I'm not sure if dd1 has outgrown her dx or if she has just taught herself to hide some of the traits.

FlyingDuchess Wed 03-Mar-10 08:26:37

Message withdrawn

lingle Wed 03-Mar-10 09:20:31

tiredmummyoftwo - you should name-change to delighted mummy of two!
Both my boys suddenly flourished at 3. I think it's quite common. DS1 outgrew all his symptoms, DS2 (4.6) is doing great and can achieve anything but I think he may always be quirky.

I've thought long long and hard about this and believe that language delay and one kind of autism are the same thing. Just one is deeper and more persistent than the other.

How is he doing on showing/being shown things and on being able to shift his attention between tasks? that sort of thing?

bubble2bubble Wed 03-Mar-10 10:46:21

Yes, DD had a private diagnosis at about 3, although I now realise it was a very unsafe diagnosis based on case history rather than observation
She subsequently 'failed' the ADOS at about 3.5 and has gradually lost more & more traits over the last year.
She does have severe verbal dyspraxia, various motor skill issues, APD et al

Early intervention grin

Jaxx Wed 03-Mar-10 10:56:49

Excellent news about your son's progress.

My son was diagnosed last June aged 3.5 with autism. Although I've always been able to see why he got the diagnosis - he certainly doesn't fit the "stereo-typical" view of a classically autistic child - he gives eye contact (unless demands are placed on him), he seems to want to communicate, is sociable with adults and some children and affectionate etc. His IQ was assessed by EP separately and is at least average - so he could be classed as HFA although locally they don't do this.

There was a child previously at DS's school, who was diagnosed by the same paed and eventually had the diagnosis removed. Many people in the school think this will happen with my son too. We however, couldnÃ?Â’t see how he would catch up with his peers given the intervention that was on offer - untrained 1-to-1, speech language group twice a week, SALT input once a term.

We started a VB programme in January and his progress has been amazing. Echolia and jargon have reduced significantly with organic well formed speech replacing them. Prepositions he had as understanding at one-word level targets (which he didn't meet) for last term, now mastered and being used in speech. His play skills have also improved, but he still needs a lot of work before he can play more freely with other children.

So I do think with the correct intervention recovery is a possibility for some children. I've certainly got my fingers crossed.

lingle Wed 03-Mar-10 11:14:49

I think it's more that as the child discovers his/her true potential then s/he no longer needs to rely on the old perservative/controlling behaviours.

tiredmummyoftwo Wed 03-Mar-10 12:43:14

Delightedmummyoftwo, I like it lingle and i think I will change name, great idea.

You all are so right, early intervention has probably made him progress so well (he started ABA about 3.6), he has been doing ABA for a year now although only about 10 hours a week. From April, he is going to do six hours a week.

Lingle, remember my thread about understanding questions and you suggested Hanen-it takes two to talk. Well, I am still waiting for the books to arrive, but from last week DS suddenly started answering questions about school (who you saw, what did you do, eat type of question). it is as if he got fed up of us asking too many questions, so thought better give the answer to stop them pestering me. Asking questions still not that great, but his receptive language is on par with his peers. Yes, we are absolutely delighted that the professionals now think differently.

lingle Wed 03-Mar-10 14:56:50


tiredmummyoftwo Wed 03-Mar-10 15:00:49

Lingle, we got the books today and it was more than words, not it takes two to talk, so I think I will be up tonight.

I also think early intervention is the key. DS was on 18-24 months programme for most of his ABA at the start of last year and beginning of this year he is on 3-4 for most things and some 4-5 which is age appropriate. It's a real shame that we lost a year since the diagnosis when we just waited for help from SALT. We were not aware of ABA as never had a child with autism in the family, we would have remortagaed our home if we knew it would make this much difference.

Sodit, only thing about dx I would say that because of that DH's company insurance is paying for DS's ABA, so it has been very useful for us.

Isn't it brilliant that our children have progressed so far to outgrow their dx?

lingle Wed 03-Mar-10 19:05:43

Yeah, more than words is a bit of a weighty tome isn't it?

But you'll be able to skip through all the stage 1 stuff now.

RaggedRobin Wed 03-Mar-10 20:58:35

we have had a similar experience with ds. at 2.6 he was displaying all sort of traits, but has really flourished and main issues are now (aged 4) echolalia and sensory issues. he has just been referred to a wonderful o.t. and is being assessed for some possible outreach support from a local language unit.

i was interested in your d.s. being able to answer questions about the past as, this week, ds has spontaneously started telling us about things that he has done in the past year or so. he didn't have the language or motivation to tell us at the time, so it is fascinating to see that he has all these stored memories that he is only now giving voice to.

troublewithtalk Wed 03-Mar-10 21:06:25

Message withdrawn at poster's request.

avalexi2 Sun 14-Jul-13 15:41:51

Can you tell me what ABA is. My daughter (20 months) is displaying classic autistic symptoms, no language development, lack of eye contact, walking on tiptoes, noisy outbursts. She has been referred for assessment so I am trying to get enough information as possible about early interventions as I believe a lot of the symptoms can be reversed with intense intervention at this age. These few posts have given me a lot of hope for her future. So hoping to hear further good news stories!

insanityscratching Tue 16-Jul-13 09:56:25

Dd who is now 10 had a diagnosis at 2 of moderate to severe autism, GDD and speech disorder. At the time it was an accurate description of dd's difficulties.
At the time of her diagnosis her development was more typical of a baby aged 6 to 12 months. She began nursery at four about a year behind her peers but she was catching up fast but by the time she finished reception year she was the most able child in her class.
Now at ten she's amazing, bright, happy, kind, funny, gentle and loving a real joy to be around. The autism is unnoticeable mostly but it's still there she's just picked up many strategies to mask it.
Her diagnosis is wrong now although people don't ask me for the diagnosis they just respond to the child she is now. I haven't instigated a reassessment because she has a statement I want to keep and an autism diagnosis carries more weight in our LEA than an AS/HFA would.

thriftychic Tue 16-Jul-13 12:57:35

i worry that my ds2 has a wrong diagnosis as he doesnt fit the bill for classic autism , its the other way round though for us , ds2 seemed to have alot of empathy and was really easygoing until age 10 or 11 and then he changed completely which is a reason a question it . surely it would have been there as a young boy , hes 14 now and was diagnosed last year.

PoshCat Tue 16-Jul-13 14:33:38

I was led to believe autistic children eventually develop certain skills, joint attention, pointing etc but later than their NT peers.

My DD is 5 next month and waves, points, shares enjoyment of activities and has great eye contact and a range of emotions.

At 2/3 she didn't do this.
I still think she's probably on the spectrum though. Still waiting for ASD assessment. It's only been over 3 years. confused

sickofsocalledexperts Tue 16-Jul-13 18:38:55

My DSD was diagnosed with classic autism at 3; today she is pretty much a normal teen, with v v minor social difficulties. She certainly wouldn't get a diagnosis now. Sadly my DS remains severe, though I reckon ABA has taken him from severe severe to severe/moderate. After much observation. I reckon a lot if it is just the luck of the genetic draw, though what we do in terms of interventions certainly has a big effect.

avalexi2 Tue 15-Jul-14 22:06:15

Thanks for those positive reports about the great progress being made by other children and young people diagnosed with ASD. It is very reassuring.

My DD has been referred for assessment on the ASD pathway but it won't start until next May when she will be 3.6. However A year on my DD (2.8) is doing great, she is quite a different child from a year ago! She is now much more sociable, makes full eye contact, appears to have good understanding of what others are saying or requesting.

She has started to make 3 word sentences and is learning new words everyday. She sings many nursery rhymes and does the actions. She interacts well with her twin sister and has started to interact with other children at nursery. She currently attends nursery one day a week and will attend two from September. She is an absolute whizz on the iPad!

Whether she is on the spectrum or not it is amazing to see what can be achieved with the support of a good SALT. We have also been lucky enough to have a specialist teacher in social & communications difficulties provide some input and support.

I am far less concerned with any difficulties she may have and much more focused on her capabilities and progress, feeling very positive about her future!

Daniella2712 Wed 11-Nov-15 00:14:50

These stories are so inspiring - thank you for hope

user1497782510 Tue 20-Jun-17 12:30:22

Love these posts they give me such hope. Any further updates from anyone?

zzzzz Tue 20-Jun-17 13:14:46

The best thing to happen to an autistic person is MOT that they no longer appear to be autistic.

Stripeyunicorn Tue 17-Apr-18 19:08:29

I know this such an old thread but I would love to know how all your DC are doing now!

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