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.

[spursmum]

Sounds like my ds. Our paed spent just over an hour with him and said he was ASD. But then he was put in for a more detailed assessment later on with a SALT, CP and soem other professionals.
My ds is also very loving, interactive etc.
Is it possible that your ds had a CDC?(child development check) and will be properly assessed at a later date?
He may not develop any 'traits' as it is a spectrum raging from mild to severe.

[tensing]

My son was diagnosed at 5 and half, he is now just over 6.

He is very loving, has a sense of humour, very happy, very chatty and he has just told me to put very smiley.

He has very strong interests, slightly odd compared to his pears.

[Kelly1978]

I think I would be a bit confused too. My ds is 5 next month, and the paediatrician has identified strong autistic traits, some of which are similar to what you are describing, but his 'diagnosis' was still left at a vague description of 'social and communication disorder and physical difficulties'. They still aren't sure, and wanting to be cautious, are waiting another 6 months to consider ASD or possible dyspraxia. And this was after around 10 hours of assessment. In the end this was a mutual agreement betweem me, the HV, the paediatrician and the other health professionals. I was fully consulted and asked what I wanted to do. Were you asked for your opinion at all? Perhaps you can discuss it further with the SALT?

[coppertop]

Re: the 1hr appointment before diagnosis - this really seems to vary according to where you live. My ds1 saw the Paed for about an hour at the initial visit. At the end the Paed asked if we had any thoughts on what the problem could be. We said autism and the Paed said that she agreed but that she wouldn't give a diagnosis without a full assessment. He was dx'ed at 3.8yrs. Ds2 was seen by a Paed at 24mths. Autism was mentioned from the start but only because we'd been through it all before. Again ds2 had to have a full assessment.

In the UK diagnosis tends to be earlier so that arrangements can be made about schooling etc as well as early intervention. Some children are only just 4yrs old when starting school so 5yrs would be too long to wait if autism is suspected early on.

26 months is quite young for a diagnosis but it often depends on the Paed. Ds1's original Paed tends to give an early dx. Ds2's Paed prefers the 'wait and see' approach. Ds2 was given a provisional dx at 22 months, had a full assessment at 24mths but it wasn't made official until after his 3rd birthday.

Lining up things is often seen as a big sign of ASD but not all children with autism line things up. Equally not every child who lines things up is autistic. Again it's often thought that children with ASD are not loving or affectionate and have no sense of humour. This isn't necessarily true.

I think that if you feel that the dx is wrong it may be worth asking for a 2nd opinion from another Paed. I obviously have no idea whether your ds is autistic or not but think that it's awful how you've just been left to get on with it by yourself. :(

[kitegirl]

Thank you for all your replies. It's not that I don't agree with the paed - it was my concerns that led me to take him to be assessed in the first place, it's just that the dx came as such a shock. She did aske me what I thought and I couldn't really say anything, not having even considered ASD because I thought that, as he socialises and points and smiles and laughs and is affectionate etc he is not autistic. But the more I read about it the more things I recognise that just make sense. I wish it wasn't so but it is . Is it possible to assess where he is on the spectrum this early? Or can you not really tell until later?

He is my first, and I am expecting another boy in August. The paed also wants him to test for fragile x. I just don't know what to do. I love him so much and want him to have a happy, fulfilled life. It's like walking in the dark at the moment, and I have no idea where I am going.

[coppertop]

It can be difficult to tell whereabouts on the spectrum they are going to be because they can change so much. When my ds1 was a toddler I would've said that his ASD was probably moderate. He didn't really talk until about 3yrs old and spent most of the time in his own little world. After the age of about 3yrs he began to make real improvements. He is now very high functioning and most people would find it hard to tell that he is autistic at all. OTOH ds2 has always been fairly high functioning.

I think a lot of areas routinely test for Fragile X now because the signs can be so similar to ASD.

I would recommend contacting the portage service to ask for a portage worker. There may be a waiting list but I've found portage a great help, both with practical help and advice and general support. They visit you at home and so it's less stressful than going to appointments.

It's also worth contacting the NAS to see if they have an Earlybird course running in your area. You might not feel up to it for a little while, especially with pregnancy/new baby but the course is apparently really useful.

It's probably not the same as real-life support but there are a lot of people on the SN board who can offer you virtual support. xxx

[kitegirl]

thanks guys - what's a portage worker???

[coppertop]

A portage worker is someone who visits you at home to give you practical help with your child's development. They often bring particular toys with them to use as therapy and can give lots of suggestions about how to deal with any particular problems you might be having. They work with pre-school age children and are usually specialist pre-school teachers.

For example, ds2's worker visits every 2 weeks. She advises on how to deal with the issues we're having, eg ds2 refusing to wear clothes, throwing things or his obsessions. She also acts as a kind of go-between for us and speaks to the professionals who work with ds2, eg the speech therapist, the Paed etc. She also comes to some of the meetings that we have. She's great. :)

[tamum]

kitegirl, I really hesitate to post this because I know all children are different and my experience might be irrelevant, but I am quite certain my 11 year old NT ds would have had the same diagnosis at that age based on your post. He was exactly the same, would watch the same video absolutely all day if we had let him, obsessed with trains, tops, fans, all the rest of it. I know it's misguided and potentially dangerous to say "oh he'll grow out of it", but I would make use of the diagnosis to get help, but bear in mind that the outlook might not be as bleak as it now seems. I am particularly aware though, that I said the same thing to coppertop when she was worried about ds2, and he did then get a diagnosis, so take what I say with a pinch of salt.

[emmalou78]

HI.

Your head must be al over the place at the moment, I know it took me a whilst to adjust after my sons dx and I WAS expecting it so for it to come out of the blue, well Ic an't begin to imagine how that must feel.

ASD can range from being mild to severe, the PEAD must have seen and heard [from the questions you answered] something that indicated the triad of impairments, a firm dx of ASD is hard to get, and with it, you can access a lot of services for your son that otherwise you couldn't...

[Jimjamskeepingoffvaxthreads]

ds1 was dxed at 3 after a 6 week assessment. I had concerns from 17 months. Lining cars up is neither here nor there really unless it's the only way a child plays. Being unable to imitate is a big indicator though, and actually a huge barrier to learning. It's the thing to work on first.

I second going for portage. It should be offered to you. Also worth applying for DLA. I can't remember the rules and regs regarding ages but the NAS has a very helpful info sheet with all of that. Worth joining the NAS as well.

An early dx is a good thing, even though it doesn't feel like it now. We have had some mild concerns about our youngest (16 months), we've recently discovered that he has an "autistic type" gut. I wouldn't say that I think he's definitely autistic right now, but I may well be starting an assessment ball rolling in a couple of months. We were fobbed off for so long with ds1, told that there definitely wasn't anything much wrong with him, told that he definitely wasn't autistic, told that he didn't need therapy. He is severely autistic and aged 7 unable to talk. I will always wonder how thing would have turned out if he'd had an earlier dx and early intervention. If your son ends up not needing his dx, they're easy to lose, so don't worry about that.

Don't waste time asking where he is on the spectrum, or trying to guess, things change so much between about 2 and 5, I think its hard to tell which way it will go pre about 5. And if anyone tells you otherwise, don't believe them :o

Agree also about looking into earlybird- it's very good, especially because you meet other parents.

The frag X test is standard with an autism dx, don't worry too much about that.

[tamum]

I hadn't realised that abotu ds3 Jimjams- is that based on the Sunderland result? Bummer :(

[Jimjamskeepingoffvaxthreads]

Thread further down Tamum.

[redbull]

hello kitegirl,
just wanted you to know that you are not alone and my ds got diagnosed in november 2004, i think what you are going through at the moment is simular to a grieving process, grieving for the child and life that you dreamt about but dont worry (easyer said than done) there is light at the end of the tunnel
i am a qualified nursery nurse(could also be a classroom assistant) and i was completeley in denial and couldnt see for months that their was a problem with ds, i sappose it was to close to home for me to notice, i knew there were problems but just put it down to VERY VERY VERY late speach delay.
DS is now at a special school and he is flying.
like coppertop suggested Earlybird would be very valuable to you to go on. I myself did the course from jan 2005 i will admit that i found it a repetitive due to i allready had knowledge of Autism due to my proffesion and i did a lot of reading as well, BUT the best thing that came out of it is the friends i made their, yes we dont get to meet up that much due to how demanding our children are we like to meet for tea and cake about once every 4 months but we are allways on the phone to each other.
It just really helps as all our children are boys and the same age so you can really symphasise and get excellent advice from them.
I cant recomend it enough i think you would really enjoy it, it would do you a load of good

[PeachyClair]

I would tbh get a second opinion if you feel you need it. I have one child with AS and another who is 34 months and has a substantially smaller vocab than yours, and sounds otherwise as you describe your son. I wouldn't say he had AS or ASD though, and the NHS here won't even bother to investigate his speech until school age (he's awaiting ahearing test i fought for).

Also, the dx process for DS1 is ongoing and has involved more specialists than you could shake a very large NHS budget at.

Gow ith your gut instincts: it may be the case you're in shock, but Mum's do know their kids well. And contact the NAS if you have any doubts, they're just fab.

[kitegirl]

thanks for all the advice - I contacted the NAS helpline which was fab, and they pointed me towards the Earlybird programme as well so we are going to try to sign up for that. We have also arranged for another assessment elsewhere (privately, thanks to health insurance) to get a 2nd opinion.

It's so helpful to know that there is light at the end of the tunnel, and that we are not alone dealing with this. At the moment support is what we need so it's good that there are organisations out there, seeing as NHS is what it is... have just spent two days on the phone and I feel drained beyond belief.

Does anyone know what the stats are for subsequent children having ASD? The paed helpfully dropped a number on me (as I sat there 6 months pregnant..) but my mind is in a fog. x

[tobysmumkent]

re stats - another thread was on this earlier in the week, last post monday at 8.30(ish, brain is now turned to mush, that time of day, sorry...).
Just to add - read your earlier post, and glad you've found NAS helpline. Earlybird is great for meeting other people in the same situation (I remember feeling very alone after getting the dx!).
And portage are fab, help with all sorts of things, full of ideas (and equipment).
Take care!

[RnB]

Kitegirl, firstly I just want to say I know how you are feeling right now and I am very sorry.

I agree with what has been said and it is usually unlikely to be wrongly diagnosed. My son (now nearly 5, autism) was diagnosed in a similar manner at 23 months, although we did go to the paed saying we thought it was autism. They do know what they are looking for.

But if the diagnosis IS wrong then there is no harm done to him (obvious emotional unheaval for you :(). If the diagnosis is right, however, then an early diagnosis is THE BEST thing. You can look into therapies and diets, and really start helping straight away.

Feel free to CAT me any time if you fancy a chat.

[asdnewbie]

My ds2 39months,was diagnosed ADHD with moderate ASD 6 weeks ago. Although we knew going into the asessment what the dx was going to be I remember asking the doc if it was mild(knowing full well it was not). Know how you feel right now. There is so much you can learn and do for your ds if you know what your'e dealing with sooner rather than later I think. I regret not waking up to instinct and reality alot sooner instead of hoping it will get better next week or month. DS vocab.is up from 25 words to almost 40 and speech is slightly clearer I think because we now have SALT and are actively working with him knowing that he will not learn speech the way others do. What helped alot was writing down everything I knew about my son into categories eg speech, sensory issues including eating habits,covers ears for sounds,takes of clothes etc, bevavious-spins and lines up things, watches same DVD over and over again.Gave me a clearer picture and helped when talking to doc.
PS Ds1 is almost 7 and no signs of spectrum.