Autism

mmalaka

Mr. Mac wrote: »

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......

Good luck....

gammygils

It took a year to get our lad diagnosed.
You will have to literally fight for your child because the services are poor.
And you'll have to be persistent and thick!
We were through all this about 12 years ago and it was tough! We had to threaten legal action or we would have got nothing.
I sympathise with your predicament & wish you the best of luck.

wlzkelly

Agreed! The services offered are dreadful. We've been locked in a battle with my son's school, (ASD Unit), and the HSE for nearly four years now.

Anyway, the best I've seen so far... GINA DAVIS. Check her out online. Try and attend some of the seminars which she gives regularly. The woman is truly amazing.

Jazbee

Hi everyone, just looking for a bit of advice on the best place to start to get a diagnosis/assesment. I have a son who is 3 in November who is showing signs of autism. My eldest child was diagnosed just before age 3 but it's a few years ago now and I know things have changed with assessments of need etc. What's the best way to go about it now? Thanks..

Morag

Go talk to your gp and see about getting a referal for an assessment.

V1llianous

Mr. Mac wrote: »

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......

I've been there too, have you considered a specialist Autism / Special Needs preschool rather than a montessori? There are several and you can apply for the home tuition grant to fund it.

tayto lover

wolfpawnat wrote: »

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!!!!

Correct. Go to a private professional for the assessment and then you can make headway. My daughter did exactly that and her 3 year old boy is now being dealt with by the EI team and has started pre-school. He is a lovely wee lad but his speech is poor (though improving) and he has difficulties with using a toilet.

myf40

Hi all,

This is one of my first posts and I'm delighted I came across this thread. I've been reading most of your stories and I can understand all that everone has been through - we've been through it ourselves since our sons diagnosis this very day 12months ago.
If you had asked me last year what would our fella be like today i couldn't have answered your question. We didn't know, quiet simply we were shell shocked. But the Mrs. dug in hard, made the phone calls, knocked on the doors, again made the phone calls every day for the past year. We made contacts, meet other parnets (BEST ADVICE EVER IS FROM A PARENT WHO HAS EXPERIENCE) - we done the rounds in a nutshell. You all know what I'm on about - we've all been there at some point.
So where is our fella today - he's in school actually. He joined a ASD pre-school and started last Monday. We are beside ourselves. To see him mix, meet, communicate (albeit his version ), play and fight just like any other 31/2 year old.
As someone else said in a previous post - Autisim is only part of our son - so very true.
Thanks for taking the time to read my rant but I look forward to reading / posting soon.
Cheers.

JustAThought

I read on irishautism.ie that there are a series of consultation roadshows coming up soon around the country & in Dublin in relation to families with autism 's needs.

I think the details are in the irishautism.ie EVENTS section.

Speaking as someone with a mild form of Autism, I can tell you that yes, we are capable of living completely happy and productive lives. The best way I have of explaining my condition is to tell people that I'm 'Wired differently", which is true, but having a different set-up isn't necessarily a drawback. Many of the greatest minds in history are believed to have been on the Spectrum.
However, there are some things you should look out for.

-Stims: these are basically physical ticks and motions that Auties perform. They usually increase when they're anxious. For the most part your child may just seem fidgety, but be aware that in extreme cases they may become a problem (such as tapping a desk escalating into banging his head on it). It's best to try to help them find 'safe' stims.

-Touching: Auties often have problems with touching. This can be hard for NTs to understand, but you'll get used to it. Your child may simply dislike being touched in certain spots (mine is my head), or they may hate touching altogether. Respect their personal bubble, for both of your sakes.

-Special Interests: This is a typical characteristic of Autism. One focuses on specific topics and seems oblivious to everything else. It may seem like a stigma sometimes, but if you help your Autie to develop their interests, you may ultimately help them to become an expert in their field.

-Meltdowns: These are one of the worst parts of being Autistic. Meltdowns are often the result of a culmination of different stresses, from bottled emotions, to an Autie feeling threatened (due to emotional triggers or someone crossing their personal boundaries), to genuine frustration at one's inability to perform seemingly 'simple' tasks. They can be frightening for all involved. The most important thing is to NOT INTERFERE. PLEASE. This is something my parents never understood. Give your Autie somewhere to release all their stress and leave them be (of course observe them if necessary). Don't touch them, don't try to talk sense to them. A meltdown is an extreme display of the 'fight or flight' instinct, so any attempt to interfere will be seen as a threat.

myf40

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!!!!!!!!

Mr. Mac

Deleted User wrote: »

Speaking as someone with a mild form of Autism, I can tell you that yes, we are capable of living completely happy and productive lives. The best way I have of explaining my condition is to tell people that I'm 'Wired differently", which is true, but having a different set-up isn't necessarily a drawback. Many of the greatest minds in history are believed to have been on the Spectrum.
However, there are some things you should look out for.

-Stims: these are basically physical ticks and motions that Auties perform. They usually increase when they're anxious. For the most part your child may just seem fidgety, but be aware that in extreme cases they may become a problem (such as tapping a desk escalating into banging his head on it). It's best to try to help them find 'safe' stims.

-Touching: Auties often have problems with touching. This can be hard for NTs to understand, but you'll get used to it. Your child may simply dislike being touched in certain spots (mine is my head), or they may hate touching altogether. Respect their personal bubble, for both of your sakes.

-Special Interests: This is a typical characteristic of Autism. One focuses on specific topics and seems oblivious to everything else. It may seem like a stigma sometimes, but if you help your Autie to develop their interests, you may ultimately help them to become an expert in their field.

-Meltdowns: These are one of the worst parts of being Autistic. Meltdowns are often the result of a culmination of different stresses, from bottled emotions, to an Autie feeling threatened (due to emotional triggers or someone crossing their personal boundaries), to genuine frustration at one's inability to perform seemingly 'simple' tasks. They can be frightening for all involved. The most important thing is to NOT INTERFERE. PLEASE. This is something my parents never understood. Give your Autie somewhere to release all their stress and leave them be (of course observe them if necessary). Don't touch them, don't try to talk sense to them. A meltdown is an extreme display of the 'fight or flight' instinct, so any attempt to interfere will be seen as a threat.

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.

myf40

Mr.mac,
just in relation to your DCA appeal. If you haven't yet check out DCA Warriors on Facebook. My better half has said on countless occasions that these people were an inspiration to her over the past year. So helpful and had great advice on appeals process etc. Also a great form for venting so much frustration that we experience from our great system that we have here.
Autism Mommies is another great one and it's not just for the mommies out there.

myf40

myf40 wrote: »

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!!!!!!!!

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.
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.

Mr. Mac wrote: »

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.

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.
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

https://www.youtube.com/watch?v=RFfAWYJGAKI

Mr. Mac

OP Here

So we won the appeal on the DCA application. So happy
A great start to the new year for our family and long may it continue.

The boy has been in montessori since last sept and has made great strides. We have him down to start national school this coming september and we are very hopeful that he will be able for it. All efforts are now focused on ensuring he has the best possible chance at enjoying and succeeding in school.

Speech and language remains an issue but progress is being made.

Autism is a strange thing which we are learning more day by day.

lillypopkins

Hi thats great news my son who is 2 yrs 7 months has also been diagnosed with autism and learning delays no speech as yet he is in the early intervenion since november and i find them great they are on the ball and i have not been left waiting for anything thank god . i have applied for the dom care and carers i sent all reports from enable ireland that states he will need to attend special pre school rather than main stream , do you know anything that could prevent me getting this as i really need it cant work and with two children its hard to make all his appointment even tho id walk there if need be as i know its what he needs

thanks in advance

ziggy23

My little boy who is 3 has just had his first part of his assessment with an occupational therapist. The main thing they were concerned with was the way in which he engages with others. For example the girl was trying to put her hand on his shoulder and he shrugged it off. Now my son would be quite shy with strangers but once he gets to know somebody he is fine will hold their hand etc. I'm just concerned that this is being over analysed I mean he could be just a shy child. I myself was painfully shy as a child. I'd rather him be a bit cautious with strangers than go off with anyone!

I'm just very confused he does show certain traits of Autism or Aspergers ie his speech is delayed but it has come on leaps and bounds. He hates certain noises eg hoover or hairdryer and he likes spinning around a lot. He was having terrible tantrums too but these have completely stopped. He is extremely bright though and very affectionate. He has poor concentration though.

lillypopkins

i know from my own experience i just knew that my child was very different he had the tantrums as do all kids but this was different he is my second son so i just knew something was not right i think trust your own judgment as you know more than anyone do you feel something is not quiet as it should be ? my son will not look at you if he wants something he cannot speak as yet he is 2 years 7 months and no words he is so intelligent but he does not understand simple tasks hates noise and crowds all autistic kids are different but they have alot of the checklist symptoms and maybe other little problems on top of that .

ziggy23

Yea I really thought there was something up at one stage he hates white noise and crowds but he had his tonsils out and grommits put in in October and this is worse now so I'm not sure now if it is just his ears are extra sensitive or if it's a condition called Hyperacusis. He can pick up a tune in a matter of minutes and adores music. His speech is slower than other kids but he is now putting sentences together so I'm not too worried about that. He is also way ahead when it comes to things like learning numbers, letters etc I've heard this is a sign. As I said he has just begun the process of being assessed so if it does turn out he's on the autistic spectrum that is fine and I'll deal with it I just found some of the things they said were quite vague and could be just little quirks of his!

lillypopkins

yes my boy had the grommets inserted also so i think for a while you think maybe they behind a little because they couldnt hear too well but i think in our case i knew at 1 year i said it to anyone that would listen and now that he has been diagnosed its a relief because we are getting so much help for him he is really coming on while he will always have problems in life he is still a happy boy . at his appointment today i was told not to count with him or do letters as they are so easy to kids with autism its better to do words than this if that helps im new to this also only attending enable irl since january but they are so good to him

mirekb

ziggy23 wrote: »

Yea I really thought there was something up at one stage he hates white noise and crowds but he had his tonsils out and grommits put in in October and this is worse now so I'm not sure now if it is just his ears are extra sensitive or if it's a condition called Hyperacusis. He can pick up a tune in a matter of minutes and adores music. His speech is slower than other kids but he is now putting sentences together so I'm not too worried about that. He is also way ahead when it comes to things like learning numbers, letters etc I've heard this is a sign. As I said he has just begun the process of being assessed so if it does turn out he's on the autistic spectrum that is fine and I'll deal with it I just found some of the things they said were quite vague and could be just little quirks of his!

This may not pertain to you but I found when my son was suspected of having ADHD (and has since been diagnosed) I used to find a reason for many of his behaviours - mostly that I 'had seen other children do that too'. One of the psychologists said to me that, yes, most of his behaviours are common to other children, but most children don't have ALL the behaviours that he has. So it was the number of 'quirks' as well as the nature of them if that makes any sense?

lillypopkins

Yes i was also told like you that any child can line up objects and do what my son does but with having all put together makes a diagnosis and even if autism is what he has i have been told this diagnosis can get better or worse at any time so it may change as he changes hopefully he will continue to improve does any of your children attend a special pre- school i was looking for some info and views on this please as he is due to start in sept and im a little worried about him being away for few hours a day
thanks

mirekb

Yes, and don't be afraid of the diagnosis. All it does is get your child the help they need - it doesn't change who they are.

I often think of it in terms of imagining how much money would people pay for the kind of one on one tuition my son gets for 40 minutes a day in school for free thanks to his allocation.

ziggy23

Yea guys ur right it probably doesnt help that all my family say oh there's nothing wrong with that child :rolleyes: If he is diagnosed with anything its fine its just the waiting around that kills me. My son goes to montessori and all they have said is that he has a poor concentration and gets bored easily especially if he knows something already. I dont think they like to say too much though.

January

ziggy23 have you ever read about Sensory Processing Disorder?

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

My little girl was diagnosed with this just before Christmas. White noise, and loud grinding noises drive her crazy and it was part of it. Her newest thing is if she gets even the tiniest drop of water on her clothes they have to come off straight away.

ziggy23

Cheers January will have a read. He hates any white noise plus drilling etc but is fine with loud sudden noises. I think I'm better off not looking things up anymore though I have myself driven demented but no harm in keeping an open mind
Very interesting though as it was noted that he had difficulty with sensory processing. Can I ask did u find it difficult getting a diagnosis January? Did you have to go through the Early Intervention Team?

lillypopkins

Hi i think if he has any real problem it will be picked up on i was sent my my doctor so if you discuss it with your doc he can arrange for your child to be seen by the relevant people. my son was also seen by health nurse who saw many things delayed and he is now in early interventin as he has so many things going on this is best for him .it sounds also similar to ADD where the attention span is limited and i agree dont look any more up as you will drive youself mad.

best of luck with it and hope you get the answers you need

linda

January

The only real stumbling block I had was getting the initial referral for her. PHN didn't seem to want to refer her onto the EI team. We were sent for a hearing test in Mount Carmel first to make sure the noise issue wasn't just something wrong.

Once we were with the EI team the diagnosis was very quick. Still waiting on referral for occupational therapy, physical therapy and for an information session on SPD. We were also referred on to the Parents Plus parenting course and I was at a coffee morning in the local community centre the other day where I signed up for it, but I was still waiting to hear more information on that also.

ziggy23

Thanks guys for all the info

missingtime

Very interesting article by David Mitchell (author of Cloud Atlas) on the Guardian

http://www.guardian.co.uk/society/2013/jun/29/david-mitchell-my-sons-autism?CMP=twt_gu#

His son has Autism and he details here what his experiences are but the fascinating part is his translation of a book written by a 13 year old Japanese boy with Autism.

Here is a piece.

Do you prefer to be on your own?
I can't believe that anyone born as a human being really wants to be left all on their own. What we're anxious about is that we're causing trouble for the rest of you, or even getting on your nerves. This is why it's hard for us to stay around other people.

The truth is, we'd love to be with other people. But because things never, ever go right, we end up getting used to being alone. Whenever I overhear someone remark how much I prefer being on my own, it makes me feel desperately lonely. It's as if they're deliberately giving me the cold shoulder.

Why do you make a huge fuss over tiny mistakes?
When I see I've made a mistake, my mind shuts down. I cry, I scream, I make a huge fuss, and I just can't think straight about anything any more. However tiny the mistake, for me it's a massive deal. For example, when I pour water into a glass, I can't stand it if I spill even a drop.

It must be hard for you to understand why this could make me so unhappy. And even to me, I know really that it's not such a big deal. But it's almost impossible for me to keep my emotions contained. Once I've made a mistake, the fact of it starts rushing towards me like a tsunami. I get swallowed up in the moment, and can't tell the right response from the wrong response. To get away, I'll do anything. Crying, screaming and throwing things, hitting out even… Finally, finally, I'll calm down and come back to myself. Then I see no sign of the tsunami attack – only the wreckage I've made. And when I see that, I hate myself.

Here is a link to the book, http://www.guardianbookshop.co.uk/BerteShopWeb/viewProduct.do?ISBN=9781444776751&guni=Article:in%20body%20link

Its called the Reason I Jump.