Diagnosis in toddlers...

[Bayoubaby1]

My 31 month old has been referred to New Orleans for a work up to diagnosis a spectrum disorder.  The wait is over a year long at this point so I have been doing a lot of research on my own.  We were told that with whatever is going on that he is high functioning and that he does have an above average intelligence, so catching it this early makes the prognosis good no matter what the official diagnosis becomes.  The dev ped did not want to give a defined diagnosis because he said that he is so young and that the Children's ospital was one of the best around so he wanted to let them make the all.  He did mention HFA, Aspergers, and PDDNOS as possiblities but said that there is a slight possibility that it could be some sort of extreme anxiety disorder.  I guess what I am wanting to know is did any of you have a child this young diagnosed who made all of his milestones on time or early?  I.e. my DS sat up unassisted aa 5 months, crawled at 6 months (although it was always a modified army type crawl or on his tiptoes), and he was walking by 9 months.  He was saying words by the time that he was three months old (just hi, hey, and mimicking other sounds), but he was saying at least ten words by 7 months, and speaking in complete sentences by the time that he was 19 months old.  I have always questioned the fact that he seems overly brilliant, but never say much for fear of looking like I am bragging, if that makes sense.  He knew his alphabet, numbers, all of his colors, could give directions to places while I am driving, etc. all before the age of two.  He always has to adhere to a strict schedule (another red flag to me because I have a sibling with Aspergers and he has this issue), ie. if we are not home by 5 PM then he cries for hours because he is overstimulated.  He has never been able to self soothe and he is very methodical with doing things.  I.e. when I get him out of his carseat he has to get out himself or we have to do it over again, if he wanted to close the door then we have to go back out and come back in and let him close the door, if he does not want to eat something on his plate then it has to go away.  If we do not repeat and modify then he has a meltdown that may last for an hour.

Lately in the past six months or so his behavior has really declined.  He has become more agressive and irritable.  He wanders around a lot instead of playing with toys that he used to play with a lot.  He repeats the same things over to himself ("I can't decide, I can't delieve (believe but mispronounced), I can't decide, I can't delieve it"...over and over and over.  He also uses echolalia a lot (we used to call him our little mockingbird).  

He also has ashtma and take meds and breathing treatments on a daily basis.  I tried to convincce myself that these were reasons for most of his agression and anger issues.  He has a history of seizures...the first one when he was 9 months old and he stopped breathing and had to be intubated and was on oxygen for days.  He seized for hours.  It was so bad that they were about to medivac us out of there to a larger hospital when they stopped.  It was the scariest moment of my life.  Since he was diagnosed with a seizure disorder, and then they recanted by saying that he is always sick when they happen so they must be febrile.  IDK.  I do know that since the first one I have always felt like they were missing something neurological.

Here is my concerns about a spectrum diagnois.  He talked early, his motor skills have always been okay (although he did walk on his tip-toes for a while...always a nagging doubt no matter what here, I think!), but he was always social (plays for the crowd, etc), always made eye contact (still does).  

He oes go to preschool and here is something else that has been a concern for me...he has to keep thing seperate at different places.  For example, at school he "plays with trucks and cars, fights over cars and trucks, and wanders around" all day.  He does not play with cars and trucks AT ALL at home.  He also will not let me sing somgs because they sing them at school, he cannot color here, etc.  

Sorry that this is so long.  I am just looking for some opinions.  I have been doing lots of research in hopes of helping him in the interim year that we are waiting for an appt. and we do have another appt with the ped next week.  I have also gotten him into a clinic that is funded by the Autism Alliance for an evaluation by them...although it will not be an official diagnosis it will help sort some things out, I hope.  Thanks so much for reading and giving any input.

[Bayoubaby1]

I have actually thought about using a timer...but I have never gotten around to getting one and I have forgotten about it...so thanks!  That is a great analogy as well with the "Alice in Wonderland" too!  

We have our evaluation at the local clinic tomorrow, and I am not looking forward to it.  My husband has decided to go with me too...he is so in denial and using every excuse that he can come up with as to why my DS's behavior is okay.  He thinks that there is something "wrong", but he does not think that it is a spectrum disorder (although he does not even understand what that is because he will not read anything.  I have just let it go and I figure that he needs time and space).  

[Sally44]

Yes picture schedules work great.  We also use a 'time timer' that shows the child how long each activity will last otherwise he has no idea of time and when he has to 'stop' something.
When they learn to read and write you can begin to swop over to written lists as well as pictures.
Yes it is alot to take it.  I found it almost like 'Alice in Wonderland'.  The more you find out the more you realise that although you are both in the same world, you are actually moving in different perceptual worlds.  It is a lot to take on.  But once you get the hand of it it does become natural (rather like learning to drive!).  You will then see how obvious alot of the stuff is, and although you never irradicate the tantrums and behaviours, you can see where they are coming from and why, and you will have lots of ways to reduce this ie. pictures that will be very effective.  Also as they grow up they improve alot.  My son is now 7 and alot of the tantrums he had as a toddler have gone.  Now he tantrums about other things, but it is much more controlable.

[Bayoubaby1]

I have heard that they use a lot of picture schedules in one type of therapy (my brain is so overloaded and tired from all of the stress of this all being so new but I cannot remember which therapy).  He is very strict about routines, so that may be a great thing for him and help eliminate some tantrums.  I am just so tired!

[kat77415]

hi.  good to hear someone from southern la. i lived there most of my life.  :)  i'm sorry to hear about all the troubles with your little one.  the absolute worst of my son's tantrums were from the ages of 2 1/2 to about 5 1/2.  the sensory stuff really works.  there was just one other thing that helped us so much more than you would think.  using pictures either in a schedule or just by themselves.  we have never been organized enough to have an entire picture schedule for our day but they do that at school.  but at home, if you are about to start some series of things like a bedtime routine or going out shopping, etc.  show the child the pics as you are telling him what you are doing and about to do.  this will help him to truly understand what you are saying and then if and when you need to change something, you can use the pics and for some reason, a lot of kids are ok with that.  we made pics of lots of things.  our son used to get upset if we were taking our other car instead of the van.  all i had to do was take photos of both vehicles and then we could include that in the plans that we were making.  we had to do that with just about everything for about a year but now, he understands so much more.  and when things change, he usually talks about it extensively but is ok with it for the most part.  keep in mind though that our son is now 6 1/2 and it has been a long time coming and he might still meltdown because they don't have the right kind of laundry soap (something i just can't plan for) at the store, our quality of life is greatly improved.  your ot should be able to help you plan this stuff too.  i hope this is helpful and good luck.  

[Sally44]

It is Irlen Syndrome.
Regarding sleep, I know another family whose child is prescribed a certain hormone to help with sleep.  Maybe you could discuss that with the doctor.
Regarding tantrums.  It is best to remove him to his bedroom (and for his bedroom to be relatively safe).  You can sit in the room with him if you want and just let him wear himself out.  Don't let him hit or bite you etc.  At his age I might put up with some screaming and shouting at me and tell him afterwards that he shouldn't shout or scream at you.  But the emotions are better out than in.  As soon as I began to understand what was upsetting my son, I began explaining to him that what he was experiencing was different to me.  That has helped him understand that he does experience things differently.  When he is really upset I might say something like "I can see that you are really upset about ............. and it has made you very angry/sad.  You need to calm down.  Lets go to your room to calm down."  Then I just wait for the storm to pass.  

[Bayoubaby1]

Sally, you make perfect sense!  You have hit the nail on the head with so many things about my DS that I have been wondering about.  He does not feel much pain...he has had chronic SEVERE ear infections and never complained, pneumonia that makes his lings hurt terribly, yet he never complains.

As far as meds...the only thing that concerns me is his lack of sleep and the fighting sleep.  Some nights he hardly sleeps at all.  For the hyperactivity, etc...we can deal with that...it is the raging that I can hardly cope with at this point.  I personally think that only when a child's learning is affected should you go the meds route (no offense to anyone who does meds...just for us at this point and at this age I do not feel that it is tha answer...if that makes sense).  There are many cases that I can see where little ones need them...and I am sure that at some point we will have to have them...I just don't think now unless it is to help him sleep.

As far as sensory overload...I have always felt that he has had those issues.  It just gets worse all of the time.

I have never heard of Arlen Syndrome, but I will look at that as well.

Thanks again!

[Sally44]

Regarding hyperactivity.  That might be down to something like ADHD.  Or it could just as easily be that he is over stimulated from a sensory point of view.  Or it might be that his hyperactivity is sensory seeking behaviour.  For example the sense of proprioception tells you where your body parts are.  If he can appear not to feel pain then there is also the possibility that sometimes he cannot feel his body sensation.  Children that have this difficulty tend to bounce, spin, swing, anything to get sensory feedback.
The other thing to know about sensory issues is that they fluctuate.  So his sense of proprioception might go hypo (under sensitive) and he will begin sensory seeking behaviour.  You can buy things like an exercise trampette to have at home that he can bounce on, or play tug of war games with him, or anything that is going to give his body feedback.  But consider that his proprioception might have gone hypo because he has been overstimulated thorough other senses.  Does that make sense?
Regarding medication.  Some parents have to do it as a last resort.  This is just my personal opinion.  All medicines have side effects and some of the drugs for those with ADHD and Autism can cause other long term damage.  Your child is very young and is still developing.  I would not want to medicate my child so that they were easier to handle in school for example.  I would want my son to go to the school that could handle his difficulties and that was appropriate for his cognitive level (which needs to be assessed at some point).  
There are alot of parents who understandably want their child to attend a mainstream school.  But for them to do that they have to medicate their child.  Sometimes it works and sometimes it doesn't.  I recently moved my son from a mainstream school to another school that is still mainstream, but they have extra staff, facilities and training for those on the autistic spectrum.  So he is in mainstream school, but effectively in a special education classroom and he has support for during playtime and dinnertime.  My son is assessed as being higher than average intelligence.  
So, as hard as it is, I would try to find any nursery/school place that can meet his needs as he is.  He has got all his life to learn, and if he really needs medication it will become clearer as he gets older.
Having said that, I know a woman and her son who both have ADHD and are both on medication and she says that she cannot function without it.  So, I am not black and white about it, but you have to be very sure about what you are doing, the side effects of  it, and the reason you are doing it.  

[Sally44]

That sounds like my son.  He can immediately learn his reading book and the dialogue of a movie, and then can repeat the dialogue to himself ie. he puts the DVD on 'in his head'.  As you say, my son is also reading from memory.
I would say read that book as it will give you alot of insight into what he is experiencing.  It will also help you find ways of reducing stimulation.
When you have completed the questionnaire you can give that to an OT to help them see the problems.  They can then go onto assess the child and put a programme together.
As he has sensory issues I would also recommend you google Irlen Syndrome.  This is a visual perceptual problem that alot of people with autism and dyslexia have.  But it can be remedied by wearing sunglasses with tinted lenses.  The colour of the tint will depend on the light that is bothering the child.  So one child might need yellow lenses and another blue or red.  This is a legitimate syndrome and our hospital screens for it.  As he is light sensitive you could have him screened and he could wear the lenses for light sensitivity (which also helps with depth perception).  
What can happen with the senses is that if one sense is not functioning properly and is not 'giving reliable information' the body adapts and uses other senses.  For example, those who are blind tend to have heightened hearing and touch.  But this adaption of the senses can cause them to become oversensitive in their other senses.  By finding out which sense is the worst affected and helping with that, you reduce the stress on the other senses and they can begin to calm down.  
Occupational Therapists assess for sensory issues and can put together a sensory diet programme.  Ask his paediatrician for a referal to an OT that has experience of Sensory Integration Dysfunction and also Autistic Spectrum Disorders (I know your son doesn't have a diagnosis yet, but an OT with that kind of experience is going to understand about rigid routines and behaviours etc).
When I go out with my son he wears his Irlen glasses (actually he always wears them), and some ear defenders (the kind you buy at the DIY store to protect your ears from loud noises).  I usually give him something to fiddle with eg. a small toy.  This allows him to be confident of going into new situations instead of trying to avoid them because they might upset him from a sensory point of view.  It also helps him to stay engaged with us for longer and not need to retreat into his own world as often or as long.
Another thing I wanted to mention about any senses that appears not to be working at all eg. appearing deaf or unable to feel pain.  Those on the autistic spectrum tend to put all their focus and attention into what they are doing at that moment and can unintentionally screen out other incoming sensory information.  Also if they are in environments that are too 'busy' from a sensory point of view, their body can shut down certain senses to reduce the incoming sensory stimulation.  So when he is playing with his toys he maybe essentially deaf.  An example of my son is this; we went to a school function where children were giving performances eg. singing and clapping was involved.  When that happened my son would cover his ears.  But after about 5 minutes he stopped covering his ears.  This wasn't because he had got used to the noise, it was because his ears were turned off and he was effectively deaf.  They do that because they cannot cope otherwise.  
At your sons age he will demonstrate tantrums and anxiety in environments that have too much sensory information in them, as did my son.  But he will quickly adapt and begin to turn those senses off.  I don't think they do it deliberately, I think it becomes an automatic reaction.  Then you will begin to see that he spends more time in his own world maybe repeating dialogue to himself.  They do need to be able to do this to protect themselves, but you also need to make his environment low stimulation to enable him to remain 'with you' (ie. not in his own world), for longer.

[Bayoubaby1]

I also wanted to say (after reading your posts again) that my DS also repeats things that he ee in movies and "read" his books word for word (of course I know that they are just memorized...but he has recited most of them word for word only after reading them literally only once or twice...and we are talking about books with a lot of words on a page (ie. Cat in the Hat).  

Thanks for the telling me about that book...I have to get it ASAP.

[Bayoubaby1]

I think that I forgot to put this in my previous post...he was already previously observed and we were told by the ped that he exhibited "extreme hyperactiviry" but that if we were not wanting to medicate him that we should not worry about a diagnosis just yet...that was a few months ago.  This past time when we got the referral for an autism evaluation we were told that he has SPD.  

Thanks so much for sharing so much information with me!

Answers to some of your questions:

Does he ever cover his ears at certain noises, or unpredictable noise? yes

Does he ever appear deaf?  yes

Is he afraid of toys that make noise? some

Is he over or under sensitive to touch. over

Do you have to cut out all tags or have problems putting on socks and shoes.  WILL NOT GO W/O shoes/slippers/rubber boots

Has he ever hurt himself, but not appeared to feel it. yes

Does he pick up bits of fluff off the floor or appear to visually examine you.  He notices every minute particle of everything.

Does he appear blind eg. unable to find the toy he wants in the toy box eventhough it is infront of him.  sometimes

Is he sensitive to bright lights or does he like shiny bright things. very sensitive...will not hardly go outdoors w/o sunglasses, hates lights in his eyes.

Does he appear sensitive to smell, taste, texture of food.   extremely

You say his balance and co-ordination is good.  He throws a ball like a high-school kid but can't catch at all?

[Sally44]

Although he is still very young and young children frequently mis-pronounce words, I would still make notes and mention to the Speech and Language Therapist how he misprounces words.  My son also does that (he is 7), and he has recently been diagnosed with Auditory Processing Disorder.  He does not 'hear' sounds as we do.  This is not hearing loss and his hearing is perfect.  It is perceptual.  He might say nessing (instead of messing), or globes (instead of gloves), or ahave (behave), or puter (computer), or posed (supposed) etc.
He may also have Semantic Pragmatic Disorder.  This relates to the meaning of language.  Those with echolalia again tend to learn language in chunks (gestalt), rather than learn single words and then string them together.  Learning in chunks means you have an overall idea of what it means, but don't understand the parts that make up the whole.  My son also repeats TV/film dialogue.  He also puts his own speech together.  But there is a difference in his echolalic speech that sounds advanced, compared to his own speech that sounds very immature.
When my son watches TV, if he hears something he likes the sound of, or he wants to remember it, he will leave the lounge and go into the hallway and repeat the sentence a couple of times to himself before he comes back into the room to resume watching the TV.
My son is diagnosed with HFA.  He has high average intelligence when assessed on non verbal tests.  He scores in the 92nd percentile for some skills and in the 2nd for things like following verbal instructions.  

[Sally44]

Olga already mentioned about perception and how 'all' information maybe bombarding them causing them to become overstimulated.  On top of that they usually have some kind of Sensory issues.
As he uses echolalia you can be sure that he has some auditory processing difficulties.  Does he ever cover his ears at certain noises, or unpredictable noise.  Does he ever appear deaf.  Is he afraid of toys that make noise?
Is he over or under sensitive to touch.  Do you have to cut out all tags or have problems putting on socks and shoes.  Has he ever hurt himself, but not appeared to feel it.
Does he pick up bits of fluff off the floor or appear to visually examine you.  Does he appear blind eg. unable to find the toy he wants in the toy box eventhough it is infront of him.  Is he sensitive to bright lights or does he like shiny bright things.
Does he appear sensitive to smell, taste, texture of food.  
You say his balance and co-ordination is good.
The woman I have already mentioned (Olga Bogdashina) has written a very good book called Sensory and Perceptual Differences in Autism and Aspergers.  She has a daughter with Aspergers and a son with autism.  Her book has a caregivers questionnaire at the back which you can complete to get a sensory profile of your child.  You might find that helpful in identifying what environmental factors are causing him difficulties.  For example my son's main problem areas are auditory and tactile.  But all of his senses are affected.  The thing to remember is that they can fluctuate throughout the day and day to day.  So in the morning he may appear deaf, but in the afternoon he is covering his ears.  This demonstrates an inability to perceive sensory information at the same 'typical' level and the fluctuation in perception causes them distress/pain or they are unaware of their surroundings.

[Sally44]

Perception is how we receive information through the senses and order it and make sense of it.  Those with autism have different perceptions to us.  Below I have printed an extract from a woman called Olga Bogdashina about autistic perception.
The behaviours you mention of separating different things between different environments is something my son also did and I think gestalt perception might be behind it.  I presume you already know about difficulties that those with autism have about generalising things learnt into different situations/environments/other people.

"On the conceptual level, gestalt perception leads to rigidity of thinking and lack of generalization. They can perform in the exactly same situation with the exactly same prompts but fail to apply the skill if anything in the environment, routine, prompt, etc. has been even slightly changed. For instance, the child can perform the task if he is being touched on the shoulder and fails if has not been given the prompt. These children need sameness and predictability to feel safe in their environment. If something is not the same, it changes the whole gestalt of the situation, and they do not know what they are expected to do. It brings confusion, frustration and anxiety.
What can we do to help them 'sort out' sensory information?

We should find out which modality does not filter information and make the environment 'visually/auditorily,' etc. simple. The next step would be to teach the person to 'break the visual/auditory, etc. picture' into meaningful units.
It is important to always communicate to the child beforehand, in a way he can understand (i.e. using verbal, visual, tactile, etc. means) what and why will be changed. Changes should be gradual, with his active participation."

I believe this extract is talking about someone with more 'severe' perceptual abilities.  But if you tend to learn in this way you will do things in one environment eg. painting, singing at school, but would not do them at home.  Some children can tie their shoelaces at home but cannot do it at school.  This isn't being silly or then being naughty.  They really cannot separate the 'activity' from the enviornment or the person.

Olga goes on to say:-

"On the conceptual level, gestalt perception leads to rigidity of thinking and lack of generalization. They can perform in the exactly same situation with the exactly same prompts but fail to apply the skill if anything in the environment, routine, prompt, etc. has been even slightly changed. For instance, the child can perform the task if he is being touched on the shoulder and fails if has not been given the prompt. These children need sameness and predictability to feel safe in their environment. If something is not the same, it changes the whole gestalt of the situation, and they do not know what they are expected to do. It brings confusion, frustration and anxiety.
What can we do to help them 'sort out' sensory information?

We should find out which modality does not filter information and make the environment 'visually/auditorily,' etc. simple. The next step would be to teach the person to 'break the visual/auditory, etc. picture' into meaningful units.
It is important to always communicate to the child beforehand, in a way he can understand (i.e. using verbal, visual, tactile, etc. means) what and why will be changed. Changes should be gradual, with his active participation."

So your son maybe over categorising and putting things/experiences into perceptual boxes that he cannot use in a different place.  Does that sound plausible from his behaviour.  For example my son's previous school used to tell me how he was obsessed and painted snakes all day.  At home he has painted maybe twice in his whole life and it ended in tears and he didn't even paint a snake!  Things he can do at home he can't do at school and vice versa.

You say your son can recognise letters and numbers.  Can he recognise them whatever colour or shape they are eg. if they are in a different kind of writing or in a different book does he still recognise them?

[Sally44]

Being on the autistic spectrum does not necessarily mean that you have low IQ, or that you have all of the characteristics of autism.  You just have to have enough of them in all three areas to get a diagnosis.  
For example, if you take social interaction.  One autistic child might not be able to interact or socialise or even speak.  Another child might speak, but use alot of echolalia and expect other children to re-enact the dialogue or film exactly as they do.  Another child might be too 'in your face' and not be able to read social cues or faces to understand that they are overpowering the other person.  Another person might be able to talk about their interests to another person, but might be able to 'allow' the other person to contribute to the conversation at all.  etc etc.  So there is a vast difference of 'behaviours' but all of those children have got 'deficits in social interaction'.  Does that make sense?
So the important thing is to find out how autism affects your child, because each one is individual and their behaviours are different.  The uniqueness is almost like a fingerprint.  Of course there are lots of similarities, as well.  For example, regarding routines and rituals.  One child might get very upset if something is done in a different way eg. how their food is served, how they are dressed, the routine to school, mum dying her hair a different colour etc.  My son is okay with all of that, but he 'needs' to watch a certain amount of TV every day, and it has to be certain programmes otherwise he doesn't feel like his day is going right.
You already know about echolalia and delayed echolalia (my son has that as well).
Two things that I have found very very useful in understanding my son are PERCEPTION and SENSORY ISSUES.
I will post about these separately.