My 21 months old son has been diagnosed with autism

36
Found 19th Dec 2009
I am feeling extremely down and helpless at the moment as my son has been diagnosed with autism. People who are affected by autism, i would like to know what therapies they are using for their autistic children and whats the progress so far? Whats a next step. His speech therapy will start in january.

I am thinking of starting him off on ABA (a very expensive therapy). Anyone has done that for their child with autism. How to arrange it? Funding options... please share your experiences. Thanks

36 Comments

Banned

21 months?

No experience of autism but I'd just like to offer moral support.
Please don't feel helpless, I promise you that once you get your head around the situation you will both be fine. I'm sure that your little boy will be in excellent (your) hands.

Don't feel helpless just from your paragraph or two, you seem to have the right approach and attitude for your son. tc

here is an interesting article which shows that autistic people with their unique skills can be used as productive workers in certain industries. i saw a tv program a couple months back were 3 austistic people were struggling to find jobs, one of the main reasons they wanted a job was to try and live as normal a life as possible and to meet new friends.

msnbc.msn.com/id/…th/

Original Poster

yes 21 months old

Original Poster

sorry 21 months

hi try the national autistic society web site been helpfull for us
my son has had it from five years old earlier this yearhe got 5 gcse's 2 in maths 3 in ict his now in sixth form doing a alevel in ict not bad
as he can read and write very little and he got good grades to with great support in collage so some thing will come goodout of this

my mum teaches special needs and as you may be aware autism covers a broad spectrum. I think until he does have some theraphy its too early to say what his life may or maynot be like. Some kids have a very much "normal" life not too dissimilair to you or i and for others it is different. But main thing is it to have love and support at home and then all things seem achievable if only takes more effort.

Original Poster

ignik;7275639

hi try the national autistic society web site been helpfull for us my … hi try the national autistic society web site been helpfull for us my son has had it from five years old earlier this yearhe got 5 gcse's 2 in maths 3 in ict his now in sixth form doing a alevel in ict not bad as he can read and write very little and he got good grades to with great support in collage so some thing will come goodout of this



good to hear that... well done to you and him. What therapies did he get on NHS

Banned

I've not heard of ABA (or at least it doesn't ring any bells!)

I doubt very much you will get direct funding if its not something available on the NHS.

However, you will be entitled to claim for disability living allowance. The amount depends on how severe things are and how much of your time is taken in caring. My eldest (11 years old) is autistic and we get approx £250 per month to care for him. I didnt even realise we were entitled to this (and no one shouts to let you know either!) As it happens, that is up for review right now. Fingers crossed it stays the same!

BTW, having this allowance also "opens up" concession avenues - but thats not relevant to your questions!

I think this will be about the best you can hope for... but fingers crossed!

Original Poster

guv;7275793

I've not heard of ABA (or at least it doesn't ring any bells!)I doubt … I've not heard of ABA (or at least it doesn't ring any bells!)I doubt very much you will get direct funding if its not something available on the NHS.However, you will be entitled to claim for disability living allowance. The amount depends on how severe things are and how much of your time is taken in caring. My eldest (11 years old) is autistic and we get approx £250 per month to care for him. I didnt even realise we were entitled to this (and no one shouts to let you know either!) As it happens, that is up for review right now. Fingers crossed it stays the same!BTW, having this allowance also "opens up" concession avenues - but thats not relevant to your questions!I think this will be about the best you can hope for... but fingers crossed!



When was he diagnosed? Has he got classic autism or aspergers?

Banned

momofone;7275849

When was he diagnosed? Has he got classic autism or aspergers?



He was officially diagnosed when he was about 3 1/2, but we knew there was problems when he was just over 2 and had lots of diagnosis etc going on in between time.

He's been diagnosed with Autistic Spectrum Disorder.

momofone;7275786

good to hear that... well done to you and him. What therapies did he get … good to hear that... well done to you and him. What therapies did he get on NHS



just lots of work from speach therpy .good p.a. at school and a hell of a lot of pushing with doctors schools and pleanty of help from my wife

guv;7275294

21 months?



good to see that it is being picked up earlier isnt it, most mothers notice that there is something 'wrong' with their child long before this stage, its good that the health professionals are listening to this now, try not to worry too much, some of the brightest people in the world are autistic, you will learn how to cope, its not necesarily something thats 'wrong' with your baby just different, good luck it will be hard but what part of raising a child isnt:santa:

I am a SENCO (Special Needs co-ordinator)at a mainstream secondary school and we have a few children at our school who are on the autistic spectrum. As has been said above, having an Autisitic Spectrum Disorder covers many different levels of differences and abilties so I would say that the important thing is to listen to professionals that are involved and to obtain as much as possible in the way of support. There should be a lot of support available once he starts nursery/school. Many autisitic children achieve well and have excellent careers - I have just employed someone with an ASD at our school. I know all of this seems general but if I can help in any way please feel free to pm at any point either now or in the future. xx

Original Poster

Susannah;7276358

I am a SENCO (Special Needs co-ordinator)at a mainstream secondary school … I am a SENCO (Special Needs co-ordinator)at a mainstream secondary school and we have a few children at our school who are on the autistic spectrum. As has been said above, having an Autisitic Spectrum Disorder covers many different levels of differences and abilties so I would say that the important thing is to listen to professionals that are involved and to obtain as much as possible in the way of support. There should be a lot of support available once he starts nursery/school. Many autisitic children achieve well and have excellent careers - I have just employed someone with an ASD at our school. I know all of this seems general but if I can help in any way please feel free to pm at any point either now or in the future. xx



thankyou.... When I hear good things about children with autism acheiving well make me really strong for my son. From February i am going to send my son to nursery for 2 full days a week. And hopefully SENCO will help as well. What kind of work do SENCO do with children on ASD?

Hi, my daughter was diagnosed with autism at 21 months too. She is now 15 and in a mainstream secondary school where she is predicted 8 GCSE's at C grade. She still struggles with a lot of social situations and friends are few, but overall she is happy and has interests which are not too weird! Good luck for the future and make sure you take advantage of any support groups in your area.

Hi,I have 3 sons,all of which have different degrees of Autism,1 is A typical,another has Aspergers,and the other is Autistic with ADHD.Itake each day as it comes,give them as much support as you can,but mostly,as someone else mentioned...lots of love and affection and praise...I will not kid you,it is very very demanding,but the rewards are often much better than you would imagine.Also look up any support groups that are local to you,they are very handy,it will give you a chance to vent you`re anger and also a shoulder to cry on....good luck

My heart goes out to you.

Some very positive thoughts here, wish I had that when my daughter was very ill at 1yr. I just could not imagine at that time, all the normal things people take for granted like starting schoool etc.

I was desperate for information. Thankfully, her illness lasted 4 yrs and there have been no further problems, she is now 23. You have the advantage of the internet and the support that can bring.

You are always stronger than you think and it is that strength that will help you fight for anything your son can benefit from. It is wrong because for children and parents in that situation, it should be offered on a plate.....automatic. However, that is not the reality.

I am sure he will achieve his own milestones at his pace. Try not to focus tto much on the future...it is unknown. Devote your energies into his here and now.

I have been waiting about a year for an assessment as people think I have Aspergers and seen 2 uni psychologists who think I am on the autistic spectrum, I do also have dyspraxia etc.

How did your son get assessed as I have had problems getting on the list and staying on it because they send out random letters about the waiting list and giving 7 days to reply but bu the time the letter arrives its dated like 10 days before so you are shoved back to the end of the list again, how they expect people with disabilities to understand I dont know.

Try ASD forums thjey are a good website.

ryouga;7278322

I have been waiting about a year for an assessment as people think I have … I have been waiting about a year for an assessment as people think I have Aspergers and seen 2 uni psychologists who think I am on the autistic spectrum, I do also have dyspraxia etc. How did your son get assessed as I have had problems getting on the list and staying on it because they send out random letters about the waiting list and giving 7 days to reply but bu the time the letter arrives its dated like 10 days before so you are shoved back to the end of the list again, how they expect people with disabilities to understand I dont know. Try ASD forums thjey are a good website.



Sorry but not sure this is helpful for the OP question here. The OP has a child under the age of 2 and is asking for help :x

:oops: I don't think you query is appropriate here. Why don't you start a separate thread? ;-)

iglimpse;7278530

Sorry but not sure this is helpful for the OP question here. The OP has … Sorry but not sure this is helpful for the OP question here. The OP has a child under the age of 2 and is asking for help :x:oops: I don't think you query is appropriate here. Why don't you start a separate thread? ;-)



Lol i was just saying I potentially have it so it can affect many people plus mentioned a good site to get info.

Original Poster

smallkiwi;7277712

Hi,I have 3 sons,all of which have different degrees of Autism,1 is A … Hi,I have 3 sons,all of which have different degrees of Autism,1 is A typical,another has Aspergers,and the other is Autistic with ADHD.Itake each day as it comes,give them as much support as you can,but mostly,as someone else mentioned...lots of love and affection and praise...I will not kid you,it is very very demanding,but the rewards are often much better than you would imagine.Also look up any support groups that are local to you,they are very handy,it will give you a chance to vent you`re anger and also a shoulder to cry on....good luck



how old are they and how are they doing now?

Original Poster

rose_cat_jr;7276996

Hi, my daughter was diagnosed with autism at 21 months too. She is now 15 … Hi, my daughter was diagnosed with autism at 21 months too. She is now 15 and in a mainstream secondary school where she is predicted 8 GCSE's at C grade. She still struggles with a lot of social situations and friends are few, but overall she is happy and has interests which are not too weird! Good luck for the future and make sure you take advantage of any support groups in your area.



good to hear positives....

Banned

tinkerbell28;7279103

Can I ask, as I have one ASD in special school and onec hild who has just … Can I ask, as I have one ASD in special school and onec hild who has just started mainstream who is awaiting diagnosis, he is having major issues at school and spending most of his time at home due to major accidents at school as they cannot care for him.Who do you go to if your SENCO is crap?Momo you will be ok,. sorry to hijack thread x If possible talk to your hv, you will find lots of local groups and support networks are available and stuff like soft play on certain days especially for ASD, all stuff to remove stress and make life as normal as poss,with those who understand:thumbsup: They can also help with dla etc.



You haven't hijacked, since its all relevant.

If you are facing this problem and its clear speaking direct will have no real effect, the first port of call will be the School Head Teacher. If you get no joy there, you would need to put in writing the problems you are having to the chair of Governors. If things are still not resolved, you can take it forward to your LEA. There are people who deal with this sort of thing (apologies, I cant remember the job title!)

The Senco at my kids school, wasn't very good IMHO, however we didnt take any of the above steps. To be honest, despite them being the official steps, I doubt it would have made any difference! If things were that bad, I think I would have simply looked for another school.

My kid is now in mainstream secondary (year 7). Lots of things have happened, but overall, we've been happy with the school and the way things have gone. On Thursday just gone, we were told (in their opinion) it isnt going as well as they'd hoped and they intend on applying for further funding. They said if they dont get it, we should be considering another school as they felt if might be a better solution. Good stuff huh!

Mod & Ed

guv;7279212

You haven't hijacked, since its all relevant.If you are facing this … You haven't hijacked, since its all relevant.If you are facing this problem and its clear speaking direct will have no real effect, the first port of call will be the School Head Teacher. If you get no joy there, you would need to put in writing the problems you are having to the chair of Governors. If things are still not resolved, you can take it forward to your LEA. There are people who deal with this sort of thing (apologies, I cant remember the job title!)The Senco at my kids school, wasn't very good IMHO, however we didnt take any of the above steps. To be honest, despite them being the official steps, I doubt it would have made any difference! If things were that bad, I think I would have simply looked for another school.My kid is now in mainstream secondary (year 7). Lots of things have happened, but overall, we've been happy with the school and the way things have gone. On Thursday just gone, we were told (in their opinion) it isnt going as well as they'd hoped and they intend on applying for further funding. They said if they dont get it, we should be considering another school as they felt if might be a better solution. Good stuff huh!



I'm sorry to hear that they may ask you to take your child out, I was recently asked to do this as the school my son is at were not happy with their funding ( albeit he has a different problem from autism ), since my son was happy at the school, I fought tooth and nail, appealed, wrote to my MP, LEA etc and I heard yesterday that they will allow him to continue on roll:thumbsup:

It's good that you been able to get a diagnosis so quickly.My eldest I suspected he had it about 16mths and by 18mths I spoke to the health visitor. He got referred a lot to various clinics but was only when he was 8 he finally got diagnosis. Can't say we've had too much help,services are very thin on the ground where I am.

If my youngest develops it,I be sceptical about doing all the chasing about I done with eldest to get diagnosis and rather trust what I know myself.

tinkerbell28;7279370

This is what I did with my middle child and it's going really badly :-( … This is what I did with my middle child and it's going really badly :-( as his school cannot cope.



My eldest getting on ok in the school he is now,he's ok in mainstream,had a lot problems at other school but I blame the school for that.

When I mean chasing about,I spent hours at a time in appointments,them doing assessments tests, from when he was about 18mths old or so,I kept telling them and they didn't listen.
Only when a lot of stuff happened in school did they start to take more notice ike the Paed etc.

I'd do a lot of chasing about for them in school to get the help needed if it was,but I think looking back I wasted a lot time in clinics before he went to school as it made no difference for him starting school.

Banned

wishihadadonkey;7279270

I'm sorry to hear that they may ask you to take your child out, I was … I'm sorry to hear that they may ask you to take your child out, I was recently asked to do this as the school my son is at were not happy with their funding ( albeit he has a different problem from autism ), since my son was happy at the school, I fought tooth and nail, appealed, wrote to my MP, LEA etc and I heard yesterday that they will allow him to continue on roll:thumbsup:



It did come a bit out of the blue!

We had recently been called into the school over something between mine and another kid which had been festering for some time. Both sets of parents were in! Having heard the story behind it, the other kid seems to be a piece of work. (The other kids said the same that he basically went out of his way to get other kids in trouble - he even had a notebook with a list of names and "naughty" incidents and was taunting with it!) Anyway, my first thought was that I didnt actually want to see the other parents, but as it happens it was a good move by the school. Obviously the other parents were no different to us, wanted things to go well and had no problem with discipline. The object was to show the kids the parents could get on, why couldnt they. Seemed to work!

So when the missus got a call last Thursday morning to go into the school that day, we had no idea what they were about to say. (Have to say it was a bit off, considering nothing untoward had actually happened.) They basically said they feared for him. Didnt think he was coping and had gone from being relatively happy, to getting very angry and upset. First we knew about it. He never tells us anything!

tinkerbell28;7279430

Yeah I'd agree there they ignored my fears fo middle bubba and now he has … Yeah I'd agree there they ignored my fears fo middle bubba and now he has started school, it's all change.



Yep you think they take more notice of people the 2nd time round,my daughter does not have it,but I watched for the signs and was certain she's ok and still is,she be 7 soon.
As for the baby being a boy,I'll be watching again,likely more closely,because I know it's usually affects more boys than girls.

Original Poster

Mum2Connor&Cerys;7279454

Yep you think they take more notice of people the 2nd time round,my … Yep you think they take more notice of people the 2nd time round,my daughter does not have it,but I watched for the signs and was certain she's ok and still is,she be 7 soon.As for the baby being a boy,I'll be watching again,likely more closely,because I know it's usually affects more boys than girls.



best of luck with your little one. Hope he doesnt have it...

momofone;7278975

how old are they and how are they doing now?



The eldest is 12..in a special school,the other 2 are 10 & 7 and in mainstream schools but struggling.They don`t really want to work with these boys because they cause too much distraction for the "normal" children

momofone;7280002

best of luck with your little one. Hope he doesnt have it...



Thanks,if he does,doesn't matter,could been born with a lot more worse things,suppose it's all different what views people have on it.

momofone;7276470

thankyou.... When I hear good things about children with autism acheiving … thankyou.... When I hear good things about children with autism acheiving well make me really strong for my son. From February i am going to send my son to nursery for 2 full days a week. And hopefully SENCO will help as well. What kind of work do SENCO do with children on ASD?


Just came back to check this thread. As SENCo at my school I do the following:
withdrawal groups to help with social situations for ASD pupils, including using social stories
access to nominated members of staff at any time (staff who are familiar with the pupil and their difficulties)
support in class
anything we can really..........
Support will vary from school to school though

tinkerbell28;7279103

Can I ask, as I have one ASD in special school and onec hild who has just … Can I ask, as I have one ASD in special school and onec hild who has just started mainstream who is awaiting diagnosis, he is having major issues at school and spending most of his time at home due to major accidents at school as they cannot care for him.Who do you go to if your SENCO is crap?Momo you will be ok,. sorry to hijack thread x If possible talk to your hv, you will find lots of local groups and support networks are available and stuff like soft play on certain days especially for ASD, all stuff to remove stress and make life as normal as poss,with those who understand:thumbsup: They can also help with dla etc.


This is a difficult one to answer. You should have Parent Partnership in your area to support you. Has your son had an MPA (Multi-professional assessment). Is the Educational Psychologist involved? I presume there is an IEP inplace? What strategies/monitoring does the school have in place? pm me if you want to 'talk'. xx

My son is 16 and was diagnosed at 2 1/2 he was at special needs school from 3 and now at special needs college but he is quite severely autistic, every autistic person is unique there are some similarities but dont expect one person to act the same as the other. A good website i have joined recently is [url]www.parentsofdisabledchildren.co.uk[/url] the people that run it have a lot of knowledge and what they dont know they do their best to find out and there are quite a few on there who's children are autistic and of a younger age than Matt so its a good place to go without the "professional" opinions just parents talking to each other
corinne
Post a comment
Avatar
@
    Text