mum of 2.10 ds with suspected HFA - can any other mums advise please?

[KT14]

Hi everyone,
I've been really worried about DS1 for the last year and would really appreciate hearing from any other parents of a child with HFA. We've just had a pediatric report which summarises DS1's difficulties as being "significant delay in language and social interaction." Informally the pediatrician has suggested that a diagnosis of HFA or "atypical" autism is on the cards later in the year as he's still only 2.10. My gut feeling has been HFA since last year when I first read about it and progress over the last year has only confirmed my suspicions unfortunately.

DS1 has limited language although has gone from 50 words to a 250 word vocab in the last few months. It's mainly nouns, the odd verb, he can say things like drink please when prompted. He usually calls me daddy or occasionally bubby as he just can't seem to get mummy even though he knows that's who I am. Any phrases more than 2 words long seem learned - ie "off we go" when we stop at traffic lights!

His receptive and expressive language has been put at about 10 months behind age appropriate. He is recently able to identify colours, shapes, animals and read numbers and simple words, and we feel he is intelligent. He hit all physical milestones on time but pointing, waving etc has always been limited compared with most children.

What concerns me most at the moment are his social skills, he is happy to play with toys completely according to his own agenda. He likes to be around people but to play on his own in a crowd. It particularly bothers me that he virtually ignores his baby brother. He can only play with other children in a chasing or hiding game, has very limited sharing skills and cannot negotiate at all.

Generally though he's a happy little boy and we have no sensory or behavioural issues beyond his lack of awareness of danger, especially where roads are concerned. He has no need to be in a fixed routine but will try to order his world, (he likes to shut cupboards, clean up spills, put his shoes on the rack etc) and feeds himself normally with cutlery and will try new foods. He very occasionally lines up toy cars but will generally play functionally with toys. He does seem to go for toys with irritating sound effects and will play them until I'm ready to hurl them out of the window. There is limited symbolic play ie pretending a bowl is a hat, but this is nowhere near the level of his peers.

I could go on and on but I won't, because I'm hoping someone will have read this far - what I really want to know is - when did your HFA child begin talking properly and how did the speech come? Did their interaction fluctuate - ie did you have weeks where they seemed to interact more or seem more withdrawn? Did any skills come and go - sometimes DS1 seems to be able to follow instructions easily, other times he'll look at me blankly..

Any advice or support gratefully received, it really helps to read posts from others in the same position. DS2 is 9 months and I'm panicking like mad about him too.. In some ways I just want to get DS1 diagnosed so we know what we're dealing with, it's still the tiny ray of hope that it's just a language delay and will all work out that's making me so anxious and prolonging the agony.

[bubblagirl]

my ds is 3.1 was diagnosed with HFA 4 weeks ago now

it was his lack of speech that was apparant and how he says things mummy is nunny daddy is gaggy but says mama fine

bob is gog replaces most sounds with a g or a k

he has improved loads in last 3 mths he has gone from putting 2 words together in saying 5-6 words together not all making sense but he is trying

HFA means they are very bright and have the ability to learn all that they need to know

my ds has no obsessions or routines within the home

but he needs routines at pre school to be able to function he will need help with interacting and learning how to interact appropiately

have already been told by SALT his speech will come along and she is amazed at the change in 3 mths although still waiting for SALT

we have just strted ata group called SNAP special needs and parents

it s fab they have lot sof courses for the children and its nice to be around other children the same

i haven't much help im afraid as at same stage myself but there is alot of support on here have had some fab people talk to me and give me words of encouragement

i was told to verbalise everything i was doing you may do this already

making tea in yellow cup

one leg in two leg in

lots of choices red cup or blue cup

basically whatever your doing talk your way through it

it really works my ds speech came along amazingly its because they dont understand the actions to the words they get taught it

[bubblagirl]

i also find if my ds is ill or run down he will appear more autistic in action doesnt hold eye contact , doesnt seem to hear what i'm saying cannot reason with him, spends prolonged time on his own engrossed in games on computer

doesnt use his words makes whining noises all the time and genuinly hard work lots of melt downs

when feeling better doesnt stop talking not interested in computer holds my gaze when talking easier to reason with and doesnt melt down as much

he can be taught all the things he doesnt know but if you want to ask anything i'll try to help

[bubblagirl]

i also find instead of saying no and trying to explain i give choices and this works really well with ds

such as if i dont want him doing something on wooden floor banging pole on floor for example if i say no and try to explain i think its too many words he cant foloow

so i say not on wood floor in mummies room or living room he'll stop and choose room

if on comp and playing me up i say you do as mummy says or i'll turn computer off he'll do as i say

he hates the bath so have to put him in a paddling pool in living room if he creates paddling pool or big bath he gets in no worries

not great examples but there never there when you need them basically choices work better than explanations as he doesnt understand them

[bubblagirl]

what i forgot to say was when normally say no and try to explain he is in melt down doing hwatever it is more and not able to hear me explain and even if he was listening wouldnt understand too much information so choices allow him to make it or it gets taken away he usually responds to choices with no fuss at all

it is pretty much they dominate it is there world adnd this does start to change ive seen slight difference in my ds as speech is coming along and understanding is starting to improve still along way off though but with the right help they will get there

[Poshpaws]

Hi KT14

Ds2 (3) has receptive and expressive language delay of around 6 months (according to SALT). However, I have a little niggle that he is a bit 'different' and he was supposed to see the dev paed today but he phoned in sick . Waited 6 months for that appointment as well .

In answer to your question, DS2's SALT does not seemed concerned about his lang dev. She says it is behind but developing along the correct lines. He can tell me if he is in pain and where, ask for things, follow on step instructions and in the last few days has started to rat on DS1 when he has taken something off him .

In terms of ASD lang dev, I would be interested to hear from other posters as well because I am not sure.

I know what you mean about watching your other children like a hawk. I am constantly watching DS3's (14months) development in both speech and interaction.

Bubblagirl, I have been following your story and I was wondering if you could tell me what type of testing they did on DS and questions they asked during the assessment. If you find it too much at the mo, I understand

[bubblagirl]

hi posh

no worries i dont mind had bad morning with it but am ok now

in mutil disciplinery assessment they asked me about family history , did ds have obssessive behaviour,

about what age was he when said first word, how did he communicate

did he need routine , eat off certain plate would it bother him to change plate,

if i told him we were going somewhere how would he react if we didnt go

never answered that one as said i dont normally not go when told him going somewhere

how does he get my attention when he wants something
point at what he wants
takes my hand to what he wants or other

how does he ask for things eg drink food etc

how does he sleep

how does he eat

eye contact when speaking

interact with others

follow instructions

all was ok for at home

they had been observing him at pre school and this is where i noticed things were not right wehn pre school teacher started talking

he doesnt know he is being spoken to when in group environment

follows there routine if it changes he cannot handle it

everything is to his own agenda

doesnt speak doesnt understand simple instructions that they ask

spends prolongued amount of time on certain things flits through other things quick

unable to sit with others at story time he is off doing own thing

as soon as she started speaking i just knew what the outcome would be apparantly he is as he is at home as he knows it all now he is used to me and comfortable with surroundings

whilst i was being asked questions SALT and community nurse was doing tasks with ds and he was being assessed on how he completed the tasks

he had to copy building brick steps and he done it to the point of presise gap between the bricks that they had left

asked him colours to point out when they were giving set instructions where is red and blue etc
did something with beads not sure what and also how he played with someone sharing
more knowing how to interact and take turns
[he doesnt understand that to well its ok if he has control]

he scored above age on tasks they did lots more but i was talking to others too much to pay to much attention

obviously at the end they came out with HFA diagnosis based on the yrs observations and tasks set but said also he was a very bright boy and has the ability to learn what he doesnt know

your ds sounds like his doing good bless him possibility i havent mentioned all questions but i remember struggling to think on some of the answers

oh thats it did he point to show me something of interest when out such as a toy

have to go back in 6 mths for another assessment

[bubblagirl]

kt14 my ds is same in speach all his words were learnt here we go from bob the builder

my ds used to be able to say mummy and daddy now nunny and gaggy

i was told to verbalise all my actions as to understand speeech they must understand the words to the actions

so evrything had to talk while doing it and it rerally worked within weeks my ds was able to say what i was doing and recognise actions to words

feels strange to start with but do it without thinking now and his speech is improving all the time no where at the level he should be on but we manage to communicate better and he has so many words he knows now

i would say if you dont do it already then do it

i was also told if he wanted something to say help so if he wanted me id say mummy help now he says help did say help now its mama help

to allow them choices to encourage there speach good luck it is worrying i know

[Poshpaws]

Thanks bubblagirl and Tclanger (sorry for thread hijack KT14).

Tclanger, what differentiates ASD from SLI?

[coppertop]

I have 2 boys with ASD.

Ds1 was dx'ed with HFA at around 3.5yrs. His lack of language was what initially got him into the system.

He only really started to talk at around 3ish, although he was able to mimic some words and phrases before then (usually copying accents and intonation too).

Ds1 had monthly SALT which started not long after his 3rd birthday. He had to learn language bit by bit rather than just absorbing language like NT children do. The SALT started off with nouns and played a lot of games with him with toys and picture cards. Then she moved on to verbs and showed him how to put 2 words together, eg "Teddy eating" "Dolly sleeping".

He learnt pretty quickly though and was assessed at 4yrs as having language that was within the normal range for his age. It was a bit quirky though. He still referred to himself in the 3rd person for a while after and mixed up things like he/she his/hers.

He saw the SALT annually for assessments. By 5yrs he was actually a little ahead for his age. At his 6yrs assessment he did so well that he was taken off the SALT's list.

His interaction definitely seemed to come and go. He's now 7yrs old and even now it still varies. Some times he seems like any other child. Other times it's like having a walking brick wall.

So far (touchwood!) he hasn't lost any skills.

Ds2 was given a dx of AS after first being assessed at 2yrs old. He started off with single words which were mostly numbers, colours and shapes. He too had monthly SALT and learned language using the same steps as ds1. He's now 5yrs old and now has very good spoken language but his understanding is quite a way behind. Instructions have to be kept very simple for him and with no more than 2 parts to them.

His interaction varies a lot. He can be a very sociable little boy on his own terms. At other times he becomes very withdrawn and won't look at or speak to anyone.

Behaviourally ds1 was the easiest to deal with. He was generally a very placid little boy, although he still had meltdowns when he thought things were wrong. Ds2 was more like a tornado who frequently exploded into a rage over every little thing.

Both had/have sensory difficulties which have affected them in different ways.

[allytjd]

Sometimes it is just one thing that takes you over the line from not being sure to KNOWING that your child is on the spectrum. for me it wasn't a test or assesment but a piece of research i read about that had tested infectious yawning in autistic children/ people, apparently autistic people do not, like the rest of us, yawn after seeing others yawn; guess what, neither does DS2. For some reason that was my moment of clarity and also after some sadness a relief and a respite from the what if? questions. One day you will know and knowing will not be as bad as you thought it would be.

[TotalChaos]

KT - DS (now 4.2) was very like your DS at that age. (except DS had a lot of echolalia - repeating scripts from telly programmes etc). Nobody is quite sure yet whether it's speech delay or ASD with DS - they say probably not, but want to wait and see. In the last year DS speech and understanding has come on a hell of a lot. He has gone from understanding at 1 word level to understanding at 4 word level, and now mostly speaks in short sentences. He is still about 12 months behind for both though. He has only just cracked pronouns - so saying "I" instead of his name. One thing I have noticed is his echolalia is much worse when he is ill. His pretend play and socialising and general alertness to environment has improved as his speech has improved. He manages very well at m/s nursery without any official support. From what I can gather there are occasionally some small group sessions with a TA, but he gets no 1-1.

[Seuss]

Wow that yawning thing is fascinating! How on earth did they ever discover that???

[ALMummy]

Well ally you are right about the yawning thing, just dashed upstairs after reading that and yawned profusely in front of DS....no yawn in response. So true about the feeling unwell thing as well. DS teachers at school will sometimes say that they think he must be coming down with something after a particularly trying day and they are always right.

Good tips Bubblagirl - especially about giving choices. I know it works but sometimes just don t have time or patience. Sometimes I just want things done now without all the negotiation. You have reminded me that it is a good strategy.

[bubblagirl]

i just yawned loads infrontof my ds nothing he just smiled why is taht then

maybe its the not being able to connect feelings with someone else

ALMummy i juts find choices help him understand its not wrong but he should do it else where

if he is naughty he gets time out to show it is wrong in a naughty sense but he gets 2 warnings and a child his age should be given i think 5-7 seconds to respond and normally it im not to hasty and in my want it yesterday mood he will respond within that time take shim longer to process what i have asked

in all honesty he is an angel 90% of the time he will do as i ask he is a placid little character who rarely strops whines alot bu this is lack of communication skills

he is a bundle of fun that likes to boing or going as he says and dance and sing

but if he is ill he has very strong autistic traits you cant sing in front of him he will shout stop with hands over his ears this isnt just my bad singing voice he he

wont hold eye contact will sit on computer all day in his aown little world

you know when he is ok as will spend the morning in living room not asking for computer when ill from 6 am he could be crying for comp to come on

also his communication and interaction is way out he whines doesnt use speech strops all the time

so i am glad he isnt ill often as that is when i really struggle but that is how i found the choices work with him more

he has no patience and doesnt understand wait a minute so is say wait a minute but then lets count to 20 while you wait and he'll happily stand and count then when we get to 20 i stop what i'm doing regardless and praise him for waiting

[KT14]

Thanks everyone for your input, will try the yawning test in a minute but strongly suspect he'll fail it as he so rarely copies any actions and is barely even looking at me this week. In the past he's occasionally copeid waving, pointing or clapping, rarely jumping, action songs etc. This was pretty much the only early indicator that something was amiss when he was tiny. Am panicking as my 9 month old seems similar at the moment although I'm not sure when they're really supposed to start copying actions.

Am already feeling very sad with it all at the moment, although reading how much your children have improved gives me hope. I particularly pray that his understanding and speech improves, it's so incredibly frustrating to be stuck at home all day with an unresponsive toddler and a young baby.

A lot of what you all say rings true, but although DS1's speech is very limited, it's not generally inappropriate, other than when he wants something he can't have, he says "wait" often several times, as if parroting me. That;s the only example I can think of where he might use inappropriate echolalia. The other day he said "where's the dog?" as we were outside his playgroup. It took me a minute to think but I remembered that usually there's a dog sitting in a house window and he'd remembered that and realised it wasn't there. That kind of thing is just starting to happen with him which gives me some hope.

There are minor flash points where he can become frustrated - sometimes if he's doing a jigsaw and a bit won't go in properly he can get frustrated and throw it for example. If he decides he wants to do something ie touch something in a shop it can be a real effort to distract him and we often end up carrying him out kicking and wailing. Difficult to know how much that's age appropriate or not. He has no road sense at all which is very scary as a parent trying to manage 2 young children. He also seems to have no idea of personal space and clambers all over me constantly which can drives me insane as he fidgets, kicks and can unintentionally hurt me.

We have nothing ritualistic like having to use the same bowl every day, wearing the same clothes etc. If anything he's too flexible, just seems oblivious to change and rarely shows any sign of noticing what goes on around him.

I am pretty convinced he has HFA (although DH thinks "it'll all be ok" but hopeful he falls on the very mild end of the spectrum, this week has been awful but I think he's off colour, it's reassuring to hear that a bad week doesn't necessarily mean a loss of skills.

[KT14]

Tclanger, just read the article you linked to. Really interesting to me as they refer to four key characteristics which may differentiate ASD children from children with a language disorder - following a point, pointing for interest, response to name and pointing on request - all of these DS1 is fine on, he's always responded to his name but pointing has really increased over the last year, although it's still not as frequent as in typically developing children (who I now notice seem to point constantly!)and he's not always looking at me when he does it. Also we have an absence of the repetitive behaviours and very limited, if any, sensory issues (other than the clambering) which also gives me encouragement.
Thanks for this, will print it out and take it to next pediatric appointment.

[bubblagirl]

without meaning to worry you but my ds has been diagnosed with HFA and does all them things

he will point if he sees something of interest and he will folloew if i point at something its how they react when they point like looking at you to share the moment as such my ds will point but will not look at me for a response

most of all with ASD is there awareness to share the task such as playing will they look at you to see what will happen next my ds doesnt he will just keep doing what his doing to his own agenda

it is very difficult to try and figure out in your own mind what could be wrong i think i diagnosed my ds several times then just settled my thought on speech delay

but wasn't a huge shock as such when we found out as in the back of my mind i kind of already new

good luck if you want to know anything more about my ds then i dont mind

[Mamax4]

What you describe is typical of HFA dcs. My 2 yo was exactly as you describe. But because he was not "severe" he got almost no services, and now that he is 10 things are really, really not good and we are scrambling to get therapies going. My advice to you is to organize intensive ABA therapy asap, because all this waiting for SALTS and OTs is just wasting precious time. The things that you, as a parent, can do, by describing what you do "here we are, putting yellow pants on" is a drop in the bucket and works only for NT dcs. ABA is what dcs like this need, and the sooner the better.

[bubblagirl]

Mamax4 could you tell me more about ABA my ds has HFA never heard of this before