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Autism

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  • 01-08-2011 8:31pm
    #1
    Registered Users Posts: 42


    My only boy who has just gone 3 has not developed as you should have in terms of his communications skills. While he has plenty of words he has not got the language or the ability to formulate sentences.

    We have been to various people for him to be assessed both publicly and privately and it pretty much looks at this stage that we are staring down the barrel of autisim. Albeit a very mild form. Now I'm ok with this in the sense that at least I know what we are working with and therefore can put together some sort of a structure to help him get on his way.

    Apart from the communication he is a perfect happy and healthy little boy. Very affectionate and a lil gem.

    Has anyone had experience with this before? Any advice/suggestions etc? Obviously our main worry is what does this mean for the rest of his life - will he be able to have a normal life etc?

    Any info provided would be great.

    The young lad has been accepted into whats referred as An early intervention Team.
    Basically a team comprising of a psycologist, Occupational Therapist and a Speech & Language therapist will work with him to help him get along.

    Been waiting well over 6 months to get to this point but light at the end of the tunnel.

    Started to get more involved in Autism action groups aswell. idea is to meet up with other parents who are going through similar ****. Amazing how a couple of conversations with people who have the experience can help you.

    Also trying to get involved in the raising money side of things. Took part in a charity football match last week and raised just under a grand from the day. Got the whole family involved. Small steps but steps nonetheless.


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Comments

  • Registered Users Posts: 4,724 ✭✭✭Dilbert75


    I'm no expert but, if he has autism, by diagnosing him early you will be making the biggest difference you can.

    From people I know in the same boat, you may well have to fight for his entitlements in terms of education but its a fight worth fighting. Sounds like you're going down the right road with the support groups - Irish Autism Action might be a good place to go too.

    It doesn't sound like you need reminding but he'll always be your son and he is who he is. Autism may be part of him but it isn't all of him.


  • Registered Users Posts: 27,645 ✭✭✭✭nesf


    Autism can be very rough for the parents but that said I do know a few adults with mild autism and while they can't function fully they're quite happy when left undisturbed with their interests. Autism doesn't have to mean long term unhappiness for the child which (in my opinion) is by far the most important thing here.


  • Registered Users Posts: 36 LittleRose


    Hi OP,

    my little boy who is now four was diagnosed with autism just before his 3rd birthday. We were half expecting the dx but when it came it was still devastating. Especially as we weren't told where on the spectrum he was. This was a hard one for me as I can deal with anything if I have information but don't leave me in the dark. Basically, we didn't know what we were dealing with but it has turned out far better than expected so far. I went from wondering if he would end up alone with no friends / partner / wife / kids, no love in his life, no one to care for him to now seeing the huge potential that he has.

    He has come on in leaps and bounds in the intervening 18 months. He is extraordinarily sociable, has a great imagination and is very, very bright and switched on. Through this journey I have come to realise that autism is only one aspect of him as a whole person.

    I would only suggest the following: keep doing what you're doing - get involved in groups, read and above all, meet other parents - they will be your best and most understanding friends in all of this and your most reliable source of information. The parents of autie kids are just amazing in my experience. And do something positive. I started a social skills group in my area and it took off. It was great for both kids and parents alike. I would also say, be careful who you tell about this. We told his aunts and uncles but asked them not to tell his young cousins as we didn't want them treating him differently. We didn't want any discrimination negative or positive. And I told some close friends but through this, have realised that people talk and also don't understand.

    What I am trying to say is we live in a small town, and I don't want him defined by this. I don't want people to think of autism when they think of him. And at the end of the day, it's his news to tell, not ours.

    Lastly, keep striving and hoping for the best for your son. You are his best advocate and you have to believe and want him to grow up and lead a normal and happy life. Include him in everything, get him involved in social activities as much as possible.


  • Registered Users Posts: 17,371 ✭✭✭✭Zillah


    Mr. Mac wrote: »
    The young lad has been accepted into whats referred as An early intervention Team.

    This is a brilliant thing to happen, the earlier the better.

    I would recommend (for anyone, not just parents with an autistic child) the film Temple Grandin (with Claire Danes. It's about, not surprisingly, Temple Grandin).

    That woman is one of my few heroes. She went from being a low functioning child to a high functioning adult with a doctorate and successful international career through hard work and early intervention. If someone ever wanted to feel some hope for a person with autism I cannot recommend this biopic enough.

    I'd also recommend Autism the Musical. Don't let the name put you off, it's a fantastic documentary.


  • Registered Users Posts: 6,124 ✭✭✭wolfpawnat


    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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  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    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.


  • Registered Users Posts: 1,508 ✭✭✭Ayla


    wolfpawnat wrote: »
    Apply to have your child assessed but do not assume that it is Autism yet.


    The OP said:
    We have been to various people for him to be assessed both publicly and privately and it pretty much looks at this stage that we are staring down the barrel of autisim. Albeit a very mild form.

    And:
    The young lad has been accepted into whats referred as An early intervention Team.

    Sounds to me like the OP has done his homework & hasn't jumped to any unneccessary conclusions.


  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    EVERY child with a speech delay/developmental delay of any kind, is referred to an EI team appropriate to their delay.

    ETA, no one actually said anything about jumping to unnecessary conclusions.

    Having autism diagnosed is, in my experience, a long and drawn out, stressful time. Doctors/PHN's/psychologists and psychiatrists don't give a ''maybe'' about an autism diagnosis. It's a process that takes many months at best and years at worse.

    OP, if you feel your child is on the spectrum, my advice to you would be to push. You're on the right road but it's a psychiatrist who will make the official diagnosis. In some cases, it can take years to get an appointment.

    It took 4 years to get my boy diagnosed. It was terribly hard. I had to push, fight and threaten.


  • Closed Accounts Posts: 543 ✭✭✭CK2010


    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.


  • Registered Users Posts: 6,124 ✭✭✭wolfpawnat


    Ayla wrote: »
    Sounds to me like the OP has done his homework & hasn't jumped to any unneccessary conclusions.
    CK2010 wrote: »
    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.

    I am merely saying that one problem does not automatically mean Autism, but to apply for assessment regardless. That way you can be safe in the knowledge that if it is/isn't you have the professional diagnosis ASAP.

    When my son was not speaking I had people ramming it down my throat that he was "clearly autistic" I still do because he does not speak yet. But he, like the OP's son is great in every other way. He was assessed and no sooner was he in the room did he go over to the Consultant and sit on her lap and babbled to her, she laughed the claims away within seconds when he showed he was fine.

    My suggestion OP, if you can, go Private for the assessment. If you are to go Public you can be waiting for ages. Speak to your GP and tell them you want to get the child assessed and you don't care what they say, as a parent you want the peace of mind!!!!


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  • Registered Users Posts: 1,508 ✭✭✭Ayla


    wolfpawnat wrote: »
    I am merely saying ... to apply for assessment regardless. That way you can be safe in the knowledge that if it is/isn't you have the professional diagnosis ASAP.
    My suggestion OP, if you can, go Private for the assessment. If you are to go Public you can be waiting for ages. Speak to your GP and tell them you want to get the child assessed and you don't care what they say, as a parent you want the peace of mind!!!!

    Jasus, for the second time, what part of the OP's quote do you not understand?
    We have been to various people for him to be assessed both publicly and privately

    The OP has applied for & received assessment. S/he is not bowing to what joe public is telling him/her.


  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    Ayla wrote: »
    Jasus, for the second time, what part of the OP's quote do you not understand?


    The OP has applied for & received assessment. S/he is not bowing to what joe public is telling him/her.


    The OP shouldn't be ''staring down the barrel of autism'' because of a speech delay!!!!!!

    My son toe walked, hand flapped, wouldn't wear ANYTHING from the waist down, couldn't enter new buildings, would ONLY eat cheerios and ONLY out of a box, didn't play or communicate (verbally or non verbally), threw unmerciful tantrums, was ritualistic to a point where the car had to be parked the EXACT same way. Was and is obsessive to the point of him being compared to an addict, has a total freak attack if flannel is brought near him, will NOT wear anything brown...I could go on and on and on...And it STILL took 4 years to diagnose him!! He was textbook autism!!!

    All Wolfpawnat is trying to say is it MIGHT NOT be autism just because his speech is delayed!!


  • Moderators, Regional Midwest Moderators Posts: 11,063 Mod ✭✭✭✭MarkR


    My son was recently diagnosed with autism. He's 4 since march. His main barrier is speech and communication. He is social, doesn't have any of the rigidity or compulsiveness that some kids have, so it was difficult for us to believe that he could be autistic.

    Early Intervention as mentioned earlier is very important. Also a preschool that specialises in ASD could be of great benefit. My son was lost in a regular creche. Too loud. Too many kids. No one paying enough attention to him.

    He's starting in a special preschool in Limerick in a couple of weeks. 4 Adults for every six kids. He's not that much of a handful, he'd play away fine, but for him to learn this is the best type of environment for him.

    We're pretty lucky, he seems to be picking up things quickly. He's got potty training down, and now he is picking up PECS to help him communicate.

    It's not the end of the world. It's not a death sentence. He just needs more help then other kids.

    Couple of books I've come across, Ten Things Every Child with Autism Wishes You Knew

    Services are shocking right now. I had to get onto a local TD to get the HSE to pull the finger out. Squeaky wheel gets the grease.

    I'm probably only a few months ahead of you in regard to the early intervention team, but keep at them, write down who you talked to, when, what was agreed, and what will happen next for everything. Keeps you focused.

    Also, don't pidgeon hole your boy, or over compensate. You may be surprised about his abilities later. You just have to have a lot of patience.

    Good luck, send me a pm if you have any questions.


  • Registered Users Posts: 1,508 ✭✭✭Ayla


    Lucyfur wrote: »
    The OP shouldn't be ''staring down the barrel of autism'' because of a speech delay!!!!!!...All Wolfpawnat is trying to say is it MIGHT NOT be autism just because his speech is delayed!!

    So are you suggesting the OP should dismiss the diagnosis reached by a number of professional & independent assessors?

    Yes, I understand speech delay isn't necessarily cause for alarm, however if the assessments have been done & mild autism has been diagnosed, then it's best just to move on & educate/activate the family as much as possible (which the OP seems to be a great job doing).

    IMO, there's no point confusing the issue by reminding anyone that speech delay doesn't always mean disorder...in the OP's child's case, it does.


  • Closed Accounts Posts: 543 ✭✭✭CK2010


    Lucyfur wrote: »
    The OP shouldn't be ''staring down the barrel of autism'' because of a speech delay!!!!!!

    I could go on and on and on...And it STILL took 4 years to diagnose him!! He was textbook autism!!!

    All Wolfpawnat is trying to say is it MIGHT NOT be autism just because his speech is delayed!!

    i agree with the whole 'dont jump to conclusions' but when the OP is being told by the professionals that it is likely and, as you say yourself, a diagnosis takes a long long time then surely its a good thing to assume that it is in fact autism, like they are being told, until told otherwise..?

    Id also like to add that just because a child is social with a healthcare professional it doesn't automatically rule out autism either. just because one person laughs away claims it does not mean they are instantly absolved, just as a diagnosis shouldnt be dismissed because its "only" a speech delay. there are so many factors to consider and assess, its not simply ticking X amount of symptoms, one being absent/present does not immediately suggest a diagnosis.

    i know that healthcare professionals dont always know best- ive had my fair share of arguing with them on behalf of my child- but i dont see why people are automatically rejecting their advice/assessment when it would seem that the OP has not?


  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    Ayla wrote: »
    So are you suggesting the OP should dismiss the diagnosis reached by a number of professional & independent assessors?

    Yes, I understand speech delay isn't necessarily cause for alarm, however if the assessments have been done & mild autism has been diagnosed, then it's best just to move on & educate/activate the family as much as possible (which the OP seems to be a great job doing).

    IMO, there's no point confusing the issue by reminding anyone that speech delay doesn't always mean disorder...in the OP's child's case, it does.


    The OP hasn't stated that the child has been diagnosed. He has said that it LOOKS like they're ''staring down the barrel of autism''. OBVIOUSLY, he shouldn't dismiss any professional opinion WHEN A DIAGNOSIS IS MADE.


  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    In my experience, healthcare professionals don't speculate about autism. For 4 years I asked every single professional I encountered, and there were a lot, if they thought my child was autistic as he was displaying classic traits. I was NEVER given a yes or no or maybe until he was officially diagnosed. Maybe things have changed now and healthcare professionals DO give a possible diagnosis.

    My son was sent from pillar to post and back again during the diagnosis. In our case, they were EXTREMELY reluctant to diagnose autism. Everything else, from anaemia to glue ear to dyspraxia to chromosome abnormalities were ruled out first.


  • Registered Users Posts: 12 Peter147


    Hi there,
    Yesterday a child minder who was minding my 3.5 year old son suggested to my wife that he "was showing the same signs as her nephew aged 4 who was recently diagnosed with Autism".

    We where of course a little supprised by this , but at the same time we often did wonder about some of his chareristics.

    I went on line so read about signs in toddlers and he did match quiet a few .. like as follows : -
    • He can sometimes stare at you blankly as if he if frightened.
    • He wont wear short sleeve tops , has to be long sleeve.
    • He is difficult when trying to get him to do a task, if you say " go upstairs , he will run the opposite direction for example"
    • He dosent like loud noises , such as hoover or dryer in bathroom.
    • He gets hyper some times , esp when visitors come , seems to put on an act and behave differently than normal.
    • Sometimes when speeking he will push his lips to one side making a shape with his mouth.
    • Dosent point or wave very much.
    • Likes to be alone
    Up till now while we did noticed all these things we didnt see them as Autism , because i didnt know anything about it , and because he seems to be developing well in general , for example :
    • he has good lanaguge skills , speaking well.
    • Toilet trained
    • eats well
    • Will interact with other kids , but will tend to stand out as being on his own , i dont think other kids can make him out and may find him strange or difficult to be with.
    Anyhow - to wrap up and thanks for reading tihs far ... what do i do next ? - i feel its clear that he has something - and that it closely relates to Autism .. i rang the Autism Action help line and they said they will send out a form to fill in and hopefully get an assessment in Sept or October.

    In the mean time - should i bring him to a Dr ? Should we change the way we deal with him now - to help him - in case he does have Autism ?
    If he has Autism , will he be able to go to a main stream school ?

    Thanks
    Peter


  • Registered Users Posts: 8,423 ✭✭✭Morag


    Go to your talk and talk to them about your concerns.
    Autism is a spectrum of behaviours and conditions, most kids who are autistic go to main stream school. Parents who have kids who are on the autistic spectrum do what all parents do, we meet the need of our kids.

    Ok some times that means having to buy long sleeved tops, or having warn out children we are going to use the hoover and put headphones on them playing music while we do it we adapt to what our kids needs. But just cos a child may have some sensory dislikes that does not mean they are on the spectrum.

    Honestly looking at the list of things, some of them are just what kids do esp at that age. The running away is the power struggle between kids and parents which is why that age is called the terrible threes, that takes hard work teaching them respect and discipline but it an be done. Putting on an act when there are visitors, again kids at that age do that.

    But the only way to know it to starting talking to professionals, start with your own gp and go from there.


  • Registered Users Posts: 95 ✭✭Happyzebra


    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. :)


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  • Registered Users Posts: 12 Peter147


    Thanks folks for the replys
    When i rang the Autism Action , they said that you dont need to go to a Dr , that the Dr will only refer you to an 18 month waiting list .. so that its quicker to fill in the questionaire that the Autism centre are going to send me and get assessed by them. I think i will go and speek to a Dr anyway just to get their perspective.
    As early intervention is important - is there anything in the next 3 months as parents we should do differently?
    Thanks


  • Registered Users Posts: 8,423 ✭✭✭Morag


    The 18month waiting list is hard we are on one atm waiting for our daughter to be assessed. Questionnaires how ever don't take the place of medical professionals.

    As for what do to in the meantime, meet your son's needs. Figure out what he needs to thrive and learn and put systems in place to make that happen. Back when I was going through this with my son I found support groups for parents with kids who have special needs to be very helpful in sharing ways to do just that.


  • Registered Users Posts: 4,128 ✭✭✭cynder


    My guy got the all clear from autism 3 months ago :D 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.


  • Registered Users Posts: 32,513 ✭✭✭✭Lucyfur


    My guy got the all clear from autism 3 months ago :D 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:)


  • Registered Users Posts: 42 Mr. Mac


    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 :D)

    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 :D

    Will keep you posted as to our /his progress.

    Keep the opinions and experiences coming....

    Thanks again


  • Registered Users Posts: 20 Keep on smiling


    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.


  • Registered Users Posts: 678 ✭✭✭alibab


    Lucyfur wrote: »
    The OP shouldn't be ''staring down the barrel of autism'' because of a speech delay!!!!!!

    My son toe walked, hand flapped, wouldn't wear ANYTHING from the waist down, couldn't enter new buildings, would ONLY eat cheerios and ONLY out of a box, didn't play or communicate (verbally or non verbally), threw unmerciful tantrums, was ritualistic to a point where the car had to be parked the EXACT same way. Was and is obsessive to the point of him being compared to an addict, has a total freak attack if flannel is brought near him, will NOT wear anything brown...I could go on and on and on...And it STILL took 4 years to diagnose him!! He was textbook autism!!!

    All Wolfpawnat is trying to say is it MIGHT NOT be autism just because his speech is delayed!!

    I have just come across this post now and i whole heartily agree that in order to have a ASD diagnosis you have to have more than just speech delay .I have 2 kids with ASD and i can tell you that the above quotes re the ritualistic behaviors etc is more like what you would be experiencing if your child has Autism . Autism is a spectrum disorder with aspergers and HFA at the top end of the spectrum but even with these you have to meet the triad of impairments in order to obtain a ASD diagnosis . The triad of impairments are

    communication as in a speech delay with severe processing problems significantly behind his/her peers in my case my 4 year old had the language age of 9 months .

    Social - They have to have significant problems in the area of social behavior ie appropriate play or mixing or even tolerating other kids or people .The kids at the higher end of the spectrum may well tolerate other kids but they will not play in a appropriate manner and it will be obvious thy are not forming friendships and are different .

    Behavior. Kids on the spectrum will not just have speech problems and nothing else they will have significant behavioral problems .Be that sensory related as in screaming in public places or evidence of self harm when stressed or ritualistic behaviors so bad that they impact on everyday life .

    You will not get a ASD diagnoses unless you have problems related to the triad of impairments and even then sometimes if the child is mild they still do not diagnose unless in impacts on there everyday life .

    Getting a diagnosis is a exhausting drawn out process that drains the life out of you and a multi disciplinary assessment is the only way to diagnose properly .


  • Registered Users Posts: 42 Mr. Mac


    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 :D)

    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.


  • Registered Users Posts: 1,309 ✭✭✭giftgrub


    Came across this thread this morning.

    Our boy is currently in early intervention.

    He's a cheery fellow, but is prone to major tantrums over small things (like if i ask him for my phone back if he's playing with it, there'll be a screaming session)

    His language is pretty underdeveloped, we know he can identify things because if we're out and point and say things like "airplane" and "dog". but there are no real sentences, a lot of his own language, (gibberish basically)

    He eats well (although is reluctant to try new foods, we're limited to spaghetti and tomato sauce, scrambled eggs, bread, fruit, yogurts, which isnt too bad i suppose)

    He's out of nappies (exept for bed) and will go to the toilet if he;s brought in, occasionally going himself.

    Socially he's ok sometimes but can get a bit rough and push other kids, he was in a playgroup but they effectively told us they couldnt deal with him anymore. (in a roundabout way)

    He's also rough with his little 1 month old sister, so now we just dont let him near her.

    Yesterday the Occupational therapist called round for her final report, his motor skills are top notch but she suggested that he may be autistic, we're still waiting on a psychological assesment.

    A lot of what i've read here rings a bell, I guess now our focus is on him.

    We've already decided to hold off on school until 2014, he'll be 5 and a half then. Slightly older i know but we think its best for him.


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  • Registered Users Posts: 42 Mr. Mac


    Hey folks

    Only realised it was a year since i originally posted this.
    Well the boy was officialy diagnosed as being autistic in January. Wasnt a great surprise to us. We knew it was going to happen. Of course you dont want to hear the words but we are happy that we know what we have to work towards and know what needs to be done.

    12 months on and he has still big problems with speech and language. This is our main concern. He starts montesori in sept and we are praying that this brings him on. The plan is to get him into national school by sept 2013. This is our goal and what we are working towards.

    We have also been able to avail of the various benefits from the government - dont want to go into detail but if anyone is in a similar position just drop me a pm and i will let you know what you need to do. It makes a huge difference

    Living and trying to raise an autistic kid is very challenging for both me and the missus. However the smiles by far outweigh the frowns. The older he gets the harder it becomes but also the more hope we have that hopefuly he will have a normal life.

    We also got a dog today to see if this will help bring the boy along. We have done our homework and know this can help. Hes on a weeks trial so will see how it goes. The dog is adoreable and so far so good. the boy is interacting well.

    Small steps on a long road......


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