Expert: James Michael Roan - 1/7/2008

Question
QUESTION: Dear James,

I'm hoping you can help - my 26 month old son has a very limited vocabulary and although he'll say things like hiya and bye bye, won't call me mummy or his father daddy. I've had him referred for speech therapy and at his hearing test, glue ear was suspected. We have a repeat test in one month's time before he will be referred to a specialist.

I'm not convinced that this is all the problem is, as he is now making sporadic eye contact - it seems fine during play, but he makes very limited contact when trying to ask for something. If we try to encourage him to make eye contact he seems uncomfortable. He rarely points at anything, and attracts my attention by looking at something and crying until I come to help him. He plays with children he knows on a one to one basis but stays on the periphery of larger groups. He responds well to his grandparents but will either acknowledge strangers by saying hello, or completely ignore them. If someone new comes to the house he will often hide his face and take some time to warm up.

His physical development has been fine and he has no unusual mannerisms but my concerns are that he will rarely point to pictures of objects when asked, and despite me pointing out animals hundreds of times to him, still doesn't seem to respond when I ask him to show me a dog, cat etc on a page.

We've recently had a new baby, and I think he's withdrawn more since he arrived, I've done my best to include him and to spend regular time alone with him but I can only describe it as if he's behaving as if he's cross with me.

He does like a routine but does not have tantrums if his routine is broken. He plays with a variety of toys but does have small rituals such as putting the same toy on the side of the bath each day, removing his shoes as soon as we enter a building for example. I'm not sure how typical this is of toddler behaviour and I was reassured that when we went on a long haul holiday recently, he was not at all upset by the complete change of routine.

I should mention that his father did not speak until he was over 4. He then became fluent within 6 months. He was a shy child and avoided eye contact. I spoke and read fluently before I was two and very routine focussed as a child. I believe that we both had symptoms of ASD as children but have gone on to be fine as adults.

I am battling against family who tell me there is nothing to worry about. They describe my son as happy and sociable, however I spend most time with him and am certain that there is a problem with his development.

I would really value some help as I am worried sick about my son!
Thanking you for your time,
Kind regards,
Katie

ANSWER: Hi Katie;

Most of your son's behavior can be explained away by his glue ear issue. My only concern, and it's a small one, is the low eye contact and lack of pointing. That having been said, I know an awful lot of people who fit his description who are not on the spectrum.

I suggest you go to my website: www.autismspectrumdisorderfoundation.org and download the M-CHAT and scoring instructions. If he fails the M-CHAT take it with you to your pediatrician for a referral for a full ASD assessment. You are welcome to share the results with me.

Kind regards,
James

---------- FOLLOW-UP ----------

QUESTION: Hi James,

Thanks for your help - it is a relief to know that the glue ear may explain away some of his behaviour. It's so frustrating that it takes so long to get it sorted!
I did download the M-CHAT and he is borderline on a couple of the questions - mainly concerning pointing (although thinking about it, he does sometimes point to pictures in books which interest him, but never a dog or other child while out on a walk, for example.) He does also gaze into space sometimes, as if he can see something I can't, but this is not for more than a few seconds, and I can usually easily distract him.
The sporadic eye contact and his sudden discomfort in making it, is what is worrying me most. He's always related very well to my husband and me, and been a happy child, and the sudden change is upsetting for us all. I also have some concerns about his development in general - it's difficult to assess his understanding when he is almost non-verbal so I think I will ask to be referred to a pediatrician for peace of mind. It does all seem to coincide with the recent birth of his baby brother but would seem rather an extreme reaction.
A further question I had - would it be typical for autistic children to suddenly regress over a period of weeks and lose some social skills or is this something which might happen more slowly over time, or neither? Could it be the onset of shyness for example?

Thanks again for your time, I really appreciate your help!
Kind regards,
Katie

ANSWER: Hi Katie;

I would definitely follow through with your pediatrician.

There are two types of autism. The most common, is present birth and detectable within a year or so. The other type, regressive autism, is less common. It generally occurs in response to an antibiotic, an illness, or the MMR. The regression does occur over a very short period of time.

Take the time to develop an historical time-line from when you began to notice regression, and in what areas. Don't let the pediatrician blow you off and have you "wait and see." I think you need a formal assessment as soon as possible.

Kind regards,
James

---------- FOLLOW-UP ----------

QUESTION: Hello James,

You were kind enough to help me a couple of months ago, I'm hoping you can again now. My son is now 29 months old and has improved in many ways since my last mail to you but I'm still very concerned about him being at risk of an ASD. I'm desperate to have this confirmed or ruled out by a pediatrician so we can begin getting the correct help for him if there is a problem. I'm trying to do as much as I can to help him myself but feel I've reached the limit of my capabilities. Since my last mail, I've had speech therapy for my child and we used our private insurance to see an ENT specialist. Glue ear has been ruled out for the moment, but I'm still worried about his development, and specifically the risk of autism. We are on a waiting list for a pediatrician but the waiting time is around 8 weeks and despite my chasing they can't speed things up. I've made lots of notes to give to the pediatrician, I'm hoping that you could give me your thoughts on this summary.

I'll start with my concerns -

Very limited use of language (here I mean verbal and non-verbal expressive communication). He has maybe 50-60 single words but does not use them all regularly. Some are much clearer than others - ie ball, duck, daddy but others are barely intelligible. He is starting to put words together spontaneously - ie open the door, i don't want that, where's mummy gone? but not frequently. Some days we can understand a good deal of what he says, other days it's all nonsense. It doesn't seem as if a word, once used, automatically enters his daily vocabulary. He does repeat words such as apple and please and is starting to say please when requesting something. Compared to other children his age, his language is very delayed. He rarely makes animal noises although he often imitates our tones (wheee, or wow for example.) (I mentioned this before but his father didn't speak intelligibly until 4 1/2 and became fluent within 6 months - we have no explanation for this.)

He sometimes seems to misunderstand simple concepts - ie pick up the bowl and put it in the sink, although I'm never sure if this is selective misunderstanding. Generally he does usually carry out instructions such as give the dummy to the baby, go and get your shoes and coat without gestures, although I find gestures do help.


He can be very hard to engage at times, especially if absorbed with the tv or an activity. I sometimes have to shout his name or distract him by putting something directly in front of him to get his attention. He generally responds well when distracted. He will join in with an activity if he feels like it, if he's tired or irritable he would much rather play alone.

He has limited interaction with other children, he will smile and engage if there is a chasing or physical activity game going on, otherwise he very much plays alongside them. He doesn't seem to empathise with their feelings too much yet, he accidentally knocked a child over at playgroup this morning and ran off while she lay there in tears. On the plus side, he does try and stop his baby brother crying by bringing him a blanket, dummy or feeding him milk.

I feel at the moment that he would struggle in preschool as he doesn't always want to join in structured activities. He will sit for a time and do actions to songs and then races around the rest of the time. He does sit nicely for snack time.

He will point at things which interest him but I'm not always sure he's trying to share them. Occasionally he will point and look at me but usually he's pointing for himself if that makes sense. He does bring books for me to read to him but doesn't generally share toys. He will engage in pushing his cars backwards and forwards to me and sometimes offers me his food to share. He brings me objects if he feels they're out of place - if he finds a button on the floor for example. His interaction with us is there, and it can be great, but I do feel it's more limited than in other children.

Positives -

He is a happy child with a good sense of humour.

He has a sense of mischief and looks at me while doing something naughty to gauge my reaction. He often seeks attention by throwing an object.

He seeks approval by trying to help, bringing the milk for the baby's feed for example. If he's done something he considers helpful he claps himself and looks to us for approval. He also does this when he's done a forward roll or come down a slide, for example.

He is affectionate and seeks cuddles from us. He loves to be tickled and general rough and tumble.

Eye contact is now almost back to normal. I would say he makes good eye contact about 80% of the time. If he seems reluctant I can now get him to make eye contact by saying "look at Mummy" or moving an object close to my face. Eye contact in play/mischief excellent. This is progress compared to the period he went through 3 months ago when any eye contact was a battle.

He enjoys being around people, even if he's playing alone in the midst of people. He likes to be near me and will follow me round the house.

His gross and fine motor skills are excellent. He has good adaptive skills, is starting to dress and undress himself, used the potty for the first time the other day.

There is no "odd" behaviour such as mannerisms, obsessions, rituals. He has habits, such as removing his shoes when entering a building but nothing that really concerns me in this area. He likes to look at things that spin and move but no more than the average toddler, if his trike falls over he may spin the wheels a couple of times but then picks it up and rides off. I am hyper aware of the significance of this play but haven't noticed anything that I would be concerned about in my child. He did go through a very brief phase of playing with the lights and taps but nothing out of the realms of normal exploratory play, ie once he worked out which switch operated which light, he stopped flicking them all and just uses the correct one. He is not in a fixed routine and happily goes wherever we take him. There are no sensory issues that I can ascertain, sometimes he narrows his eyes if unsure of a situation, he can also stare at lights (although we're talking a few seconds here, not for prolonged periods) I've also noticed he prefers having bare legs but doesn't remove his trousers in public! Noise and busy places don't seem to bother him.

He has some imaginative play although it's limited. Today for example, he has pretended to cook in a play kitchen (by stirring in a pan) and has also pretended a sieve was a hat. He will "talk" on the phone and likes things like play farms and houses although the play is basic.

He is always engaged in play, he never sits still unless watching tv or being cuddled. He learns easily by observing and has already mastered all his Xmas jigsaws and puzzles. He can do things like switch the washing machine on (on the correct setting!) and set up a dvd through watching me do it. He knows where everything is kept and helps me unload the dishwasher and put items away. He doesn't seem too bothered if we move things but will sometimes put them back where he thinks they go.

He will now point to objects and pictures in books on request, and can identify about 20-30 pictures in the book we use most. He can name only a few though (ball, apple, bear for example)

I appreciate that there are a lot of positives in my child, however the general lack of language and verbal communication is extremely worrying to me. He seems an easy and content child, and rarely has tantrums. In some areas he appears totally "normal" but I feel he is definitely different from other children in his peer group. He seems a little bit oblivious to the world around him sometimes, he's easy going but I never know how much he's actually understanding of what's going on. I've taken the M-CHAT and on a good day he'd scrape through, on a bad day he'd fail on the spontaneously sharing interests points.

My major concern and question, is - do you think he may be mildly autistic? And - if he had something such as PDD-NOS, what could I best do to help him at the moment? (We live in the UK) I'm worried about getting him early intervention if it's needed and also that if he falls at the edge of the autistic spectrum with a more ambiguous disorder it may be more difficult for us to get him help. Private speech therapists are in short supply in our area, I've had a referral to a special nursery so we're pursuing that at the moment.

Your thoughts and advice are greatly appreciated. Sorry this is such a wordy mail, I've come to realise how complex this issue really is and a few lines just don't do it justice!

Thanks so much,
Katie

Answer
Hi Katie;

You have painted a really clear picture of your son. Remember, I am not diagnosing anything here just providing general education and information.

Based entirely on you descriptions above, it is my opinion that IF your son is on the autism spectrum it would be on the very high end. He does show good attention to task, almost too good. This is sometimes described as "monotropism" and is seen in high functioning autism (HFA)/Asperger's syndrome (AS). His skills are really quite high and I would be surprised if he, at this age, would be able to get a diagnosis of HFA/AS. On the other hand, he does have a speech delay and possibly a small receptive language delay. When I consult in Dublin I work with an excellent set of private early intervention programs for very young children. They literally work miracles with children who have autism and language delays. They use small groups with assistants to help cue and prompt children who need it it. They use an eclectic ABA style with a very small teacher to student ratio. Groups work on social, language, imitation, and cognitive skills employing sing-alongs and game format. I highly recommend something like that for your son.

If the UK is like the Republic of Ireland you need to make it clear to the psychologist in advance that you will not accept a diagnosis of either PDD-NOS or Semantic Pragmatic Language Disorder. You want a diagnosis of either HFA or AS.

Kind regards,
James