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Autism
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01-08-2011 7:31pm#1
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OP, please do not think that I am downplaying the situation, but a lack of Communication is not an automatic sign of Autism! Every child is different and many are slower at developing certain areas than others. My son is 2 and a half and has barely any speech, but full comprehension. He was assessed not too long ago and there is nothing wrong with him (thank goodness) other than the obvious lack of speech.
Apply to have your child assessed but do not assume that it is Autism yet. If he is perfect in every other way then you have very little to be worried about
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wolfpawnat wrote: »OP, please do not think that I am downplaying the situation, but a lack of Communication is not an automatic sign of Autism! Every child is different and many are slower at developing certain areas than others. My son is 2 and a half and has barely any speech, but full comprehension. He was assessed not too long ago and there is nothing wrong with him (thank goodness) other than the obvious lack of speech.
Apply to have your child assessed but do not assume that it is Autism yet. If he is perfect in every other way then you have very little to be worried about
Wholeheartedly agree with this.0 -
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wolfpawnat wrote: »OP, please do not think that I am downplaying the situation, but a lack of Communication is not an automatic sign of Autism! Every child is different and many are slower at developing certain areas than others. My son is 2 and a half and has barely any speech, but full comprehension. He was assessed not too long ago and there is nothing wrong with him (thank goodness) other than the obvious lack of speech.
Apply to have your child assessed but do not assume that it is Autism yet. If he is perfect in every other way then you have very little to be worried about
tbh OP id much rather accept the diagnosis, wrong or otherwise, and intervene now in whatever way they advise you to as opposed to saying 'ah sure not all delays equal autism'- a delay in communication does not mean he has autism, but you're the one who knows your son and knows how the assessments are going etc so im pretty sure you'll be able to evaluate the situation for yourself in time. but its always best to get started ASAP if it is autism, believe me.
a family member of mine is autistic. its very very severe though, hes ten and he cant talk or use a toilet, but on the other hand he can be so clever that you wonder how hes so capable of one thing and not another. its weird! so while i do think its great to be involved with other parents in the same boat, just remember that they do not reflect your sons future. at all. we're all different. just like other families without an autistic child are. i know another person with autism in a mainstream school.
do your research now on entitlements etc. but remember that cuts will mean they'll prob all change. but do your homework either way. for all case scenarios.
for now, keep the communication going with him. try really hard to pronounce words well and constantly use words with objects/actions. keep 'training' in communication of all kinds, regardless of development. you know, if you're playing ball- say things like 'you're great at throwing the ball' etc. instead of 'good throw', things like that, matching the words to the object or action. its no harm with all young kids tbh.
we're all here to help anyway. glad you got an early enough diagnosis, it'll stand to ye, its so important to be quick with intervention etc. nobody can tell you how he/his life will turn out, even without autism we couldnt tell you, but autism can vary soooo much so it really is something you just have to wait and see with but with such caring parents im sure he'll be a happy boy. best of luck. if you ever need a chat im only a PM away.0 -
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Op good to hear that your son will have access to md team. Early intervention is priceless. Regardless of whether he is autistic or not prepare yourself for the fantastic leap forward he is going to make in the next 12 months! Yah it will be hard work for you but well worth the investment, especially when you see how well he is developing. Many wonderful tear jerking moments ahead. 0
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My guy got the all clear from autism 3 months ago
at the age of 4 and 1/4
he was in the early intervention services for 2 and 1/4 years before diagnoses as his was complicated.
HE has sensory issues, speech and language issues, severe and is in the 1st percentile for receptive/expressive/phonological speech (out of 100 children 99 will do better than him in the 3 areas). poor play skills (now improving) and is hyperactive. adhd is still questioned.....
Autism was hanging over us for 2 years but his diagnoses is severe speech and language disorder (not delay)....
he receives OT ( for poor fine motor skills and hyperactivity), speech and language therapy, psychology (for behavioral difficulties) and early intervention educator (play skills).
his starting school in September and will have a shared sna for 15 hours a week, from 10.30 to 1.30.
We have been told that his speech and language disorder is that severe that he may never reach average (even as an adult). His disorder is likely to follow him through secondary school and into adulthood. But with early intervention there is HOPE that he will reach average.0 -
grindelwald wrote: »My guy got the all clear from autism 3 months ago at the age of 4 and 1/4
he was in the early intervention services for 2 and 1/4 years before diagnoses as his was complicated.
HE has sensory issues, speech and language issues, severe and is in the 1st percentile for receptive/expressive/phonological speech (out of 100 children 99 will do better than him in the 3 areas). poor play skills (now improving) and is hyperactive. adhd is still questioned.....
Autism was hanging over us for 2 years but his diagnoses is severe speech and language disorder (not delay)....
he receives OT ( for poor fine motor skills and hyperactivity), speech and language therapy, psychology (for behavioral difficulties) and early intervention educator (play skills).
his starting school in September and will have a shared sna for 15 hours a week, from 10.30 to 1.30.
We have been told that his speech and language disorder is that severe that he may never reach average (even as an adult). His disorder is likely to follow him through secondary school and into adulthood. But with early intervention there is HOPE that he will reach average.
My lads speech was the same grindel, I was told he wouldn't ever reach the level his peers would be at, especially as he didn't utter a word til he was almost 5. Being told he ''wasn't going to reach his full potential'' was all the fuel I needed. He's now in the 97th percentile for expressive and receptive speech and also for reading and comprehension
PM if you need anything, I have BOXES of speech therapy exercises in the attic:)0 -
Hey everyone.
OP here. Apologies for the delay in my response but have been away on holidays in sunny spain with the missus and the young lad soaking up some much needed sun (we had a blast by the way)
Thanks a million for all your contributions. It really does help us on this journey which can be a very long one. We have out first meeting with the early intervention team on tuesday afternoon and we are both (me and the missus) both quite nervous as to what to expect, and are we going to get even worse news than we are expecting.
We are expecting that in time he will be diagnosed as being autistic. Problems with communciation, speech & language and a sensory disorder. To clear up any confusion this is what we are expecting from our discussions with private specialists and also people who have been involved in this area (friends, family etc)
yes i am aware that there is a chance this is not autisim but it is just our educated opinion from all of the knowledge we have at our disposal at this point in time.
He is a gem of a lad with so many qualities going for him. He is affectionate, very happy, interactive, sleeps well, eats well, energetic, enthusiastic etc.... OK some of these attributes are not earth shattering but to me they are important.
Me and the missus do find it very hard at times as he is clearly differnet to other kids his same age and we do wonder what the future holds. But at the same time we are very grateful for what we have and wouldn't swap him for anything in the world.
Then again if he ends up supporting Man U he will be booted out
Will keep you posted as to our /his progress.
Keep the opinions and experiences coming....
Thanks again0 -
OP - Firstly, well done to you and your partner for acting quickly and seeking help for your son. Regardless of the diagnosis at the end of the assessments, he is still you little boy and the most important thing is to avail of as much intervention as you can get for him. Early intervention can make a huge difference!
If your son is diagnosed with autism, try not to get caught up with the label, try to focus on his needs. (This is easier said than done).
My son is five years old and has been receiving "early intervention” since he was 18 months. He was diagnosed with mild autism at 2 ½ years . At the time, my husband and I were completely devastated (initially) even though we had been expecting the diagnosis. When we recovered from the upset we sat down together and wrote a list of his needs, then we wrote another list of things we could do to help meet each need. For example: "Jack" had limited play and social skills at 2 1/2 so we took him to parent and toddler groups, playgrounds, play centres etc. so he was exposed to play and to other children.
We also wrote a list of goals we would like to achieve as a family:
(i.e that Jack would start going to the pool with us every Saturday or that he would be toilet trained by the time he was three etc..)
“Knowledge is power”, talk to other parents, join support groups if you want or if you find them helpful. In my experience parents are generally only too willing to help each other out. I found attending courses and reading books helpful too - if you can understand what is causing your son’s upset than you can work on a solution. For example: Our son had lots of sensory issues associated with this autism, he was absolutely terrified of the shower, he would become really distressed anytime he was placed under the shower. When the OT assessed him, he explained that for our son, the drops from the shower when they hit his skin they felt like nails. We changed over to baths then and there were no more tears. Another thing that really upset "Jack" was light touch, the OT explained that "Jack" preferred deep pressure so bear hugs worked much better. We've worked with a number of OT's over the last couple of years and Jack no longer has difficulties with showers and his sensory issues are managed successfully by following a “Sensory Diet” which is just simple and fun activities that are built in to his everyday life.
We also had our son tested in the UK for allergies and we found out that he had serious allergies to Gluten, Dairy and Soya. When we removed these from his diet we noticed huge improvements, reduced bowel problems and increased concentration and he started to develop speech. Some parents with children on the spectrum follow the gluten and casein free diet, we found that it really helped Jack but we have friends who tried it and apart from improving bowel health they didn’t notice any other improvements. The diet can be very time consuming and expensive so if you are going to try it I would advise you to ask your GP to carry out a blood test to see if your son has allergies to gluten/dairy first.
It is now 2 ½ years since Jack’s diagnosis and life is great, it is very challenging but it is extremely rewarding. His speech and language is now within normal range. (Jack could say Dada and Baba at five months but he was three years old before his next word came. On the day of his third birthday he said Mammy – the happiest day of my life so far). I found that as once as the speech started to improve Jack wasn't as frustrated and the "terrible twos" style tantrum became less frequent.
We recently had "Jack" reassessed and we have been told that he has a high IQ and is more likely to have Aspergers now. They reckon his intelligence was under estimated in his initial autism assessment as he was not able to speak at the time.
I have seen first hand the difference early intervention can make, "Jack" is chatty, very sociable and he receives loads of invites to birthday parties. (I remember in the early days before pre-school, I used to cry at night thinking he will never be invited to parties etc.) How wrong I was!
"Jack" is starting in a mainstream school in two weeks time and I can't wait to see him run in the door in new school uniform. I'm so proud of all he has achieved in the last couple of years. While there are loads of challenges and hurdles, being a parent of a child with special/ or additional needs is such a privilege
Finally, and I believe most importantly, make time for yourself and your partner. Children can add stress to any relationship but a child with special needs or additional needs can add additional strain. When my son was diagnosed, I became totally and utterly consumed with autism and trying to solve all my son's challenges to the extend that I froze out my husband without meaning too. I wouldn't go out or go on holidays as I thought no one could look after my son like I could. I was wrong, it is good to have a break away, even if it is only a few hours and it is great for the child too as they become more independent.
OP - I wish you and your family the very best of luck over the next few months, if you ever need to chat feel free to post here or PM me or the others, there are lots of great people on this forum who are only too happy to help.0 -
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Keep on smiling wrote: »OP - Firstly, well done to you and your partner for acting quickly and seeking help for your son. Regardless of the diagnosis at the end of the assessments, he is still you little boy and the most important thing is to avail of as much intervention as you can get for him. Early intervention can make a huge difference!
If your son is diagnosed with autism, try not to get caught up with the label, try to focus on his needs. (This is easier said than done).
My son is five years old and has been receiving "early intervention” since he was 18 months. He was diagnosed with mild autism at 2 ½ years . At the time, my husband and I were completely devastated (initially) even though we had been expecting the diagnosis. When we recovered from the upset we sat down together and wrote a list of his needs, then we wrote another list of things we could do to help meet each need. For example: "Jack" had limited play and social skills at 2 1/2 so we took him to parent and toddler groups, playgrounds, play centres etc. so he was exposed to play and to other children.
We also wrote a list of goals we would like to achieve as a family:
(i.e that Jack would start going to the pool with us every Saturday or that he would be toilet trained by the time he was three etc..)
“Knowledge is power”, talk to other parents, join support groups if you want or if you find them helpful. In my experience parents are generally only too willing to help each other out. I found attending courses and reading books helpful too - if you can understand what is causing your son’s upset than you can work on a solution. For example: Our son had lots of sensory issues associated with this autism, he was absolutely terrified of the shower, he would become really distressed anytime he was placed under the shower. When the OT assessed him, he explained that for our son, the drops from the shower when they hit his skin they felt like nails. We changed over to baths then and there were no more tears. Another thing that really upset "Jack" was light touch, the OT explained that "Jack" preferred deep pressure so bear hugs worked much better. We've worked with a number of OT's over the last couple of years and Jack no longer has difficulties with showers and his sensory issues are managed successfully by following a “Sensory Diet” which is just simple and fun activities that are built in to his everyday life.
We also had our son tested in the UK for allergies and we found out that he had serious allergies to Gluten, Dairy and Soya. When we removed these from his diet we noticed huge improvements, reduced bowel problems and increased concentration and he started to develop speech. Some parents with children on the spectrum follow the gluten and casein free diet, we found that it really helped Jack but we have friends who tried it and apart from improving bowel health they didn’t notice any other improvements. The diet can be very time consuming and expensive so if you are going to try it I would advise you to ask your GP to carry out a blood test to see if your son has allergies to gluten/dairy first.
It is now 2 ½ years since Jack’s diagnosis and life is great, it is very challenging but it is extremely rewarding. His speech and language is now within normal range. (Jack could say Dada and Baba at five months but he was three years old before his next word came. On the day of his third birthday he said Mammy – the happiest day of my life so far). I found that as once as the speech started to improve Jack wasn't as frustrated and the "terrible twos" style tantrum became less frequent.
We recently had "Jack" reassessed and we have been told that he has a high IQ and is more likely to have Aspergers now. They reckon his intelligence was under estimated in his initial autism assessment as he was not able to speak at the time.
I have seen first hand the difference early intervention can make, "Jack" is chatty, very sociable and he receives loads of invites to birthday parties. (I remember in the early days before pre-school, I used to cry at night thinking he will never be invited to parties etc.) How wrong I was!
"Jack" is starting in a mainstream school in two weeks time and I can't wait to see him run in the door in new school uniform. I'm so proud of all he has achieved in the last couple of years. While there are loads of challenges and hurdles, being a parent of a child with special/ or additional needs is such a privilege
Finally, and I believe most importantly, make time for yourself and your partner. Children can add stress to any relationship but a child with special needs or additional needs can add additional strain. When my son was diagnosed, I became totally and utterly consumed with autism and trying to solve all my son's challenges to the extend that I froze out my husband without meaning too. I wouldn't go out or go on holidays as I thought no one could look after my son like I could. I was wrong, it is good to have a break away, even if it is only a few hours and it is great for the child too as they become more independent.
OP - I wish you and your family the very best of luck over the next few months, if you ever need to chat feel free to post here or PM me or the others, there are lots of great people on this forum who are only too happy to help.
Loved this post - has so many similarities to what we are going through at this moment. The missus just read it and its amazing how she feels the same way u did during the same phases.
Have heard alot about the diet and it is something we have considered but so far have decided not to try it. Still on the table though (excuse the pun)
Had first meeting with early intervention yesterday and was delighted at how it went. The team are great and we know we are in safe hands. They are going to work with the lil man over the coming weeks and months and this will include assesments for autisim and aspergers.
Aspergers initially freaked the 2 of us out as we felt that this was even worse than what we were expecting (mild form of autisim). Great to hear from your experience that this is not necessarily so. Ok i know each case is different.
We long for the day when our lil man holds conversations with us and we know this day will come (hopefuly). He is chatty but only in the form of baby talk. This we hope will improve the more the early intervention team works with him.
Yesterday was a great first step. Hes in the door. Hes in the system and we can kick it on from here.0 -
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Sorry maybe I wasn't clear in my definition of a 'stim'; a stim is what we do when we feel stressed, ie. tapping, twitching, rocking. Your son's problem with 'dirt' is the 'trigger', so to speak. Unfortunately, triggers are harder to deal with because they're like phobias. They cause stress and that triggers the need to stim. Stims are more like a release than anything. I've made a point of trying to 'face my fears' in order to reduce my triggers, but that requires a certain amount of restraint that not everyone has, particularly a child.Thanks so much for the peek of what might be going on in our sons head. He's progressing so well but his "Stims" are begining to show true. In fact some of them are so strong that they are almost ruling his and our lives to a degree. One stim that has transformed itself of late is he hates having dirty shoes or what he percieves to be dirty shoes. Absolute meltdown when this happens. But we're working with him on this and other less noticable stims through OT sessions.
As a adult can you "feel" or recognoise a meltdown coming on?? Over time have learned to know the actions that can cause a tick and how to handle these. Apologies if this in appropiate to ask but so far all our info is coming from care givers & parents with kids of similar age to our own.
By the way i like your term "Autie" - rhymes well with naughty which seems to be very apt to our fella at times!!!!!!!!
Auties perform stims when they're happy or excited as well. It might be helpful for you to try to separate his 'happy' stims from his 'sad' ones, so you know when to intervene.
I can usually tell when a meltdown is on the way. It's like a build up of stress that feels like kinetic energy. It's very different from the energy I get from doing something enjoyable, because I feel like I'm wound too tight and need to let go. The result is an explosion of bottled up feelings. They're almost impossible to avoid because although one can be perfectly happy being Autistic, it does cause a lot of stress.
Meltdowns will start to rear their ugly heads more during adolescence and periods of immense change and pressure. Your son is probably too young for the difference between a meltdown and a tantrum to be noticeable. The best way to spot a meltdown is that he would be inconsolable and hysterical for a while, and then return to normal as though nothing has happened. It's best not to call too much attention to them, as it can be kind of embarrassing.OP here
Great post and really appreciate your insights from the other side.
Gotta agree that the term Autie's is great and will defo use it going forward for my lad
My lad has all the traits you have listed above and i will start to use your advise on how to deal with them.
He doesnt really have meltdowns which is good but i expect them to come our way the older he gets and the more he wants to explore and push his boundaries.
Hes a gem of a boy but speech and language is still the big problem. new words come his way but sentences are few and far between. hopefuly this will improve with time, help and education.
Got refused the DCA last week and the appeal has begun. We wont stop fighting for our son. It's the least the boy deserves.
Is your son old enough to read? It is a sad fact that some Auties simply aren't verbal. He probably understands a lot more than he lets on, but for whatever reason speech just doesn't interest him. He may improve with age and hopefully he will. This is a case where special interests may be helpful. If people like something and they find someone that shows an interest in it, it's natural for them to want to share that enthusiasm. Try to cultivate his interests with books, which will exercise his vocabulary and also give you something to engage with him over. For example, if you see him put the book down after looking at/reading it, ask him about it. He might surprise you by gushing over what he just found out.
I remember when I was 15 I went almost completely non-verbal for over a year. The only time I ever wanted to speak was when people asked me about Middle-Earth.
There's a growing community of people on the spectrum online. Have you been to wrongplanet.net? There's loads of us there, with varying degrees of Autism/ADD/OCD. There's a parents' forum you might find helpful.
...And on a lighter note here's an episode of Arthur that deals with Autism
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