DS, 26 months, 'diagnosed' with ASD - I am not sure what to think

[kitegirl]

I would love to get some input from anyone with children with ASD. My DS, 26 months, has delayed speech, he has only over the past couple of months started to communicate with words and has a vocabulary of about 25 'words' (including his own ones e.g. bee = tree etc) and his understanding is somewhat behind his peers. I wanted to get him assessed and finally yesterday we had an appointment with a Consultant Paediatrician.

She spent an hour with my cranky and tired son and asked questions about his milestones and play, and did a few puzzles with him. I told her that DS does not have any problems interacting and playing with other children, he goes to a nursery twice a week and I've seen him with his friends - they play together. What the consultant picked on was his lack of imaginative play, and the fact that he is really into his Brio train set and little cars - he likes lining the cars (or ducks in the bath or dominoes) up, arranging them in lines. He is really into his dvds and wants to watch either Nemo or Madagascar every day, nothing else. And he never copies me or dh, never tries to imitate eg. feeding the teddy or hoovering etc although will sometimes do this if prompted. This, together with her assessment that his speech and understanding are somewhere around 15-18 month stage, led her to suggest that he is somewhere along the autistic spectrum.

Typically, I was given a bunch of brochures and was sent on my way. She wrote into his health record book 'autistic spectrum disorder diagnosed' and we have an appointment with a SALT for an assessment in three weeks, after which she is going to see me and dh again (without ds) to talk about the diagnosis.

Apart from being terribly upset and worried, I am a bit confused as to how ASD can be diagnosed in one hour with a 26-month old, by one consultant. Back home in Finland ASD is not diagnosed until about age 5, and usually it takes several appointments with different specialists, including neurologists and developmental psychologists. I don't know what to think. To me, DS seems like a normal, lovely little boy, yes he has his own personality and his interests but he has always been loving, communicative and with a great sense of humour.

Maybe I am in denial - is it possible that the autistic traits will manifest themselves more as he gets older? Should we seek a second opinion and where would we go? A private consultation? What are the questions I should ask about the assessment? I just don't understand what it is that we are dealing with. I'd appreciate your help.

My son is 3 and was diagnosed asd and he would only saw a few words and days can by and he wouldnt say anything. Hes on the waiting list for salt and ot, so the sooner he gets it the better. Im just coming to terms with it now and i realise i am because i can talk about autism without crying now.

Not sure if this helps but copied this from thread on RDI(Blossomhill and Saker-2 threads)
RDI has a different perspective. Am looking into it for my ds.

1. Can your child share experiences with you either verbally or by smiling and laughing with you?
2. Can your child borrow your perspective? For example, do they look to you to help them resolve uncertain situations or are they soothed by a reassuring look on your face?
3. Can they "dance" with you? e.g. can they play their part in co-ordinating peekaboo with you or walking side-by-side, conversing with you?
4. Can they reflect on past experiences and anticipate future ones? Can they use an experience they had yesterday to avoid a negative result or repeat a positive one? Do they seem to understand consequences?
5. Can they go with the flow? Can they adapt easily to new conditions, see things in shades of grey, come up with multiple right answers?

Hello again,
I'd love to get your input on the recent developments regarding ds. I wrote that the dx from the community paediatrician came as a complete shock, because it was slammed on us on the back of a short CDC when ds was tired and cranky, and because we really didn't think he ticked the boxes. The paed said that ds is a child that will definitely always be on the spectrum and that there is a 50% chance that he will regress towards the more serious end of the spectrum. We were adviced to start looking at special schools, and have him tested for Fragile X.

Thank you asdnewbie for the list, the thing is - ds does all these things. He communicates, interacts, shares, smiles, points, takes turns, makes choices, shows empathy - his vocab which was behind has come on tremendously over the past few weeks and he is now stringing two words together, and spends all day 'chatting' (using what sound like sentences - he talks to me animatedly but mostly gibberish!).

He had an assessment by a SALT three weeks ago and the SALT diagnosed speech delay with 'some social communication difficulties'. We then had him assessed privately by a developmental paediatrician (experienced in early diagnosis) and an autism specialist and another SALT. A three-hour interview (us)and a four hour assessment (ds) later, they said that no way is he on the spectrum and very very unlikely that he will ever be. Yes there are 'differences' but apart from a speech delay he is fine. They just recommended some SALT and to enjoy our lovely boy.

Deep down I knew this was the case. However, as a result of the hasty diagnosis by the community paed, we had two months of hell, it affected our parenting, he had to have an unnecessary blood test, what used to be relaxed play sessions became training occasions 'oh my god he didn't look me in the eyes when I called him' etc, I was unsure whether to discipline him and how to deal with tantrums.... it changed everything. I want to go back to the paediatrician and tell her that she was wrong, I want to go and tell her what she put us through and that she should think before she upsets any more families - but there's probably no point in that. Again this shows that doctors don't always know everything and that you know your child best.

• write a letter! It did seem wrong at the time.

Glad you had the initiative to sort it though.

I have just read your thread and it brings back a whole host of memories and emotions. A year ago ds was diagnosed as ASD by our NHS consultant Paed. My husband and I were completely thrown as a few weeks earlier we had seen a private neuro-developmental paed, who had said, 'No signs of autism, lucky you!'. The Private Ed Psych said, Speech and Language Delay, def not autistic, yet the NHS Ed Psych thought possibly was on spectrum. Your description of your DS sound very similar..... A year down the line we are still open minded as to who might be right. The autism label has been very useful re getting financial help for Speech therapy. I am delighted the dx seems to be Speech and Lang orientated but don't ignore the fact that there is a huge cross over with communication and some activities linked with autism,(ie visual learning), can be a fantastic help! Good luck!