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Original poster

dose anyone out there have an autistic child???

26 replies

diddymiddys · 18/10/2010 22:49

Hi this may seem a odd post but my son is three years old and we feel he has autisum as do his peadeatrition, dietition, speech and lang..... and so on, he will not eat ANYTHING so is on callorie based powder to mix in his milk (the only thing he will have)he is repetative constantly repeating the same sentance over and over he will not sleep or have much to do with other children although he has got two friends who he will assositate with but very loosley. he hand flaps, head buts and can be physically aggressive towards myself anf husband. All that may sound straight forward, me and my husband have accepted that he is probally autistic but our family will not. this is where the problem lies, they make excuses for him like its terrible threes rather than twos, or all children do that, or the best he will eat when his ready ( he has not had a full meal in two years as he will scream at the sight of food, and will not go into a supermarket) my question is at what point do my family become suportive or accept that there is a problem with our son. any comms will be greatly apreacheated. ta

OP posts:
keepingupwiththejoneses · 18/10/2010 22:53

I found that my family where like that until I we got our final written dx. My mum only belived it when she watched something on tv showing autistic children.

StarkAndWitchesWillFindYou · 18/10/2010 22:56

They have the luxury of not needing to accept it and the luxury of grieving.

You, his parent just have to get on with it. You have to keep up with the very challenging parenting and the appointments and the relentlessness. No time for you to deny.

I think that is why there is a difference between parents and wider family.

Incidently, at that age you might like to look into ABA.

Original poster
diddymiddys · 18/10/2010 22:56

how long did it take to get a final written it drags on so we have been on with this since my son was 18 months hes three now and where still where we were then

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Original poster
diddymiddys · 18/10/2010 22:57

starkandwitches...... ABA whats that please?

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StarkAndWitchesWillFindYou · 18/10/2010 23:03

It's a style or teaching or parenting that focuses on behaviour in little steps to mould it towards being more acceptable and to gain skills.

You can set up a whole intenstive programme, or you can just learn the skills and apply them in your day to day life. The more that you do, and the more consistent you are, the faster a child learns.

It looks rather like supernanny's style.

Many parents on this board use or have used the techniques at some stage of their children's development and having the skills in your parenting toolkit is very helpful.

You might want to read Catherine Maurice's 'Hear My Voice'.

Original poster
diddymiddys · 18/10/2010 23:05

Great i will defo look into that, thanks so much, i dont understand why this whole process has to be so hard

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tiredmummyneedswineandsleep · 18/10/2010 23:07

i'm going through the same with my parents. they adore ds and just say he is a bit energetic. wont really accept that he is autistic and feel nursery, pre school etc are acting too soon and he is only just 3 and will 'grow out' of his behaviour. agghh its not easy ds is their golden boy which is all very lovely but i wish they'd accept it.
I feel for you it's hard enough without extra (unintended) grief!

tiredmummyneedswineandsleep · 18/10/2010 23:10

my ds is also 3.2 and been in system since similar age. paed has sent letters to lea and pre school to say ds should be treated as if he has a dx.

BialystockandBloom · 18/10/2010 23:12

You say he's seen a paediatrician etc - have they given a diagnosis, or suggested one?

This is a truly horrible, and hard time for you (we have recently got a diagnosis of ASD for our ds at the age of 3.5, after at least a year of knowing it ourselves) so I do feel for you.

I would say the best thing you can do at this point is to concentrate on you and your son - forget about your family for now. What matters is the help that your ds gets, and the help that you as his parents get. If they can help with practical things like looking after him (or any siblings he has) to give you a break then take them up on it, but don't feel like you have to waste time and energy (or emotional energy) trying to convince them at this stage. Concentrate on you and your ds.

ABA is Applied Behaviour Analysis - an intensive behavioural therapy, and it is shown to be most effective when started at a young age. We have just started this with ds and have already noticed how it has hugely helped him with communicating and reducing tantrums. It is very expensive though, and most often has to be funded by you.

A huge number of people on this board have children with ASD so have a browse through and you'll pick up lots of useful info.

All the best.

Original poster
diddymiddys · 18/10/2010 23:12

he went to nursery fine months he went for they made him sit whilst the other children ate there dinner and he refused to go since, that line he will grow out of it, if i had a pound for every time i heard that one...... my husband has to work away from home he is a long distance lorry driver he can come home just our son wont sleep he can not get the sleep he needs to be able to drive safely. how long have you been on with the autisum diagnosis thing~?

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Original poster
diddymiddys · 18/10/2010 23:17

BialystockandBloom.... we have seen a paediatricion, speech and language and dietition they all say it could be autisum related or autisum, but would like to monoter him for a few more months to see how he progresses if at all. My argument and MAIN concern is he is three years old and weighs 21 lb, his little sister of 7 months is 18.6 lbs something needs to be done the dietion is adament its autisum but can not do anything else untill ''the underlieing issue is resolved'' we just keep going round in very long circles

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MistsAndMellow · 18/10/2010 23:21

Your son sounds very similar to my DS. He was diagnosed in February of this year but sadly my parents are still not very helpful.

It's very upsetting because I see my friend's parents and parents-in-law attending awareness courses, reading everything they can find about how best to support their grandson and the family but mine are just determined to remain ignorant.

One thing I did find after the diagnosis was that it was a huge weight off my mind because all along people had been telling me that it was my fault that DS doesn't eat or sleep, can't wait for anything, can't walk along beside me holding hands and suddenly there was an explanation that most health professionals at least, accepted.

I hope it goes well for you and that you do get the support you need in RL.

Original poster
diddymiddys · 18/10/2010 23:26

MistsAndMellow how do you tackle the eating issues with your child, my son will not go near food not sweets icecream anything? he will not have medicated calorie drinks he on this powder called pro cal now untill he catches on then that will end. i constantly feel guilty about him not eating i understand its him not me i always offer him food but get the same screaming spitting and physical vilolent responce from him. My mother in law will not accept he is different although she accepts he has some kind of eating disorder i want to shke her and shake her and shout at her to get her to wake up and realise. its so frustrating.

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MistsAndMellow · 18/10/2010 23:27

Oh you have been given "wait and see". You are correct, it isn't good enough when better outcomes depend on earlier intervention.

Then again while I was lucky to have only three months between concern for DS and diagnosis he hasn't actually had any real help other than a place at a special pre-school.

Regarding sleeping, a paediatrician can prescribe Melatonin which is a naturally-occurring substance, nothing heavy or worrying. It works sporadically with our son but you might find it useful to try.

Original poster
diddymiddys · 18/10/2010 23:31

MistsAndMellow i will try to tackle the paed about the malatonin as where there friday again many thanks

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MistsAndMellow · 18/10/2010 23:33

I have been told to provide regular meals and sit at the table Hmm

DS will only eat one type of crisp, the ends of ice-cream cones, the occasional noodle, huge amounts of milk and some fruit. He also has a violent reaction to food. Many autistic children have sensory issues which have nothing to do with eating disorders.

This book has no specific strategies but is wonderful to read. I cried after the first few pages because I was just so relieved to hear that I wasn't alone.

I'd throw give it to your mother in law too if I were you Grin

Original poster
diddymiddys · 18/10/2010 23:40

i think i could think of something better to throw at her, she thinks he has an eating disorder, what i dont know, he wont eat anything, at all he went through a phase of eating garlic about 10 months ago that was the last solid think that has passed his lips he survives on full fat cows milk with added callories and nutrition we have been told if he drops below 20 lb they will be fitting a feeding tube. some part of me wants this to happern as then i will know that he is getting the proper nutrients and vits that he needs to substain a life other than laying on the sofa all day as he has no energy (but plenty to protest with) and then people (experts) may realise there is an immediate problem. but i dont want him to have to have a feeding tube at the same time i dont want to be the one to put him through that.

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MistsAndMellow · 18/10/2010 23:49

"no energy but plenty to protest with" Grin

Absolutely! And the crankiness is hardly helped by lack of sleep or food. I have heard that autistic children just don't feel hunger signals in the way that others do. Certainly seems true for my son.

I give DS milk through the night and while the health visitor and dentist frown on it a lot, the dietician and paed think that we're lucky he's having that as it contains all that is needed for the first year or so of life and not to dream of taking it away.

DS is fine weight-wise though and has clear skin and eyes, strong nails so in his case it works.

I have thought about tube-feeding in the past but have come round to thinking that milk may well be all he needs if he has enough...

Maybe increase the volume of milk if that's what he wants / likes if only to get his weight up?

Original poster
diddymiddys · 18/10/2010 23:57

he will only have milk four times a day he is very routine oreantated its true i beleve he dose not feel hunger i wake up starving, but he feels no pain either he has has some horrific falls in the fast and has just got up and walked away.

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MistsAndMellow · 19/10/2010 00:06

Oh so that's why you need to fortify the milk, sorry.

Yes it's common for children with sensory issues to be really sensitive to some things such as hair-washing and light touches, and to seek out strong feelings by running into things and jumping.

Yet some strong things just don't seem to get through such as pain or hunger.

Definitely something to discuss with the Paed I would think. Good article here:

www.mentalhelp.net/poc/view_doc.php?type=doc&id=8790&cn=20

How is he with hair-washing out of interest? We did DS last night and it sounded as if we were boiling him in oil from the screams. Haircuts also practically impossible.

Original poster
diddymiddys · 19/10/2010 00:11

my son has VERY long hair so that explains the hair cut siuation, baths he hates he will tolorate a shower just but the second you get near his hair.... well all hell lets loose hes 3 and i can not manage him alone washing his hair it takes me and my husband and as i already explained in an earler post he works away so he gets his hair washed at weekend..... screams, bites , spits, kicks, head buts, holds his breath you name it he dose it when its hair wash time. what fun

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MistsAndMellow · 19/10/2010 00:20

Yes what fun. Lots of our children from this board have long hair Grin

I have to say I admire you. My husband only has a twenty minute drive to work and I fear for him, you must be taking on a lot of the tiredness and with a younger child as well...

I'm quite angry on your behalf now actually, how dare your family not support you when you have all this and a husband working away?

MistsAndMellow · 19/10/2010 00:26

Have messaged you Smile

Original poster
diddymiddys · 19/10/2010 00:31

well my youngest shes 7 months and has just been diagnosed with cerebral palsy and epilepsy but shes really good she sleeps and eats so i can not really complain about her but at the moment i have a peadeatrition for her and my son a dietition, physiopherpoyst, speech and launguage pheropyst a neurological someone or other and the list continues. My family live in a differnt part of west yorkshire to me so i can only see them some weekends when my husband can drive me over as i can not drive, my husbands parents are around the corner but i try to avoide i like them very much buit cant do with all the excuses they provide for my sons autisum some of them are dam right stupid

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Agnesdipesto · 19/10/2010 07:22

ABA can help with eating it's a reward based system it sets up an expectation that child will get treat if does something adult wants eg speaks, eats. To start with very simple eg put 2 toys on table and say give me x then use hand over hand to get him to give you x. Then praise him and instantly give him treat can be whatever his favourite things are. That way teaches idea you do x and then you get y. Children with autism motivated by different things so will go without food etc you can address this by ABA / behaviour methods. Takes a long time though and expensive. You have to run programme yourself and prove it works then try and get LA to fund. In West Yorks look at Leeds Library website they run monthly autism
group where autism outreach team - specialist teachers go along and can give you advice. For ABA look at Autism Partnership in Leeds. They have workshop coming up on eating and sleeping in Nov or Dec I think. Is on their website. You should apply for a statement. Look at NAS, IPSEA. You do not need to wait for diagnosis you can request a statutory assessment now and go look at special school nurseries. Are you getting speech therapy and portage? If not ask for this to start now. There is a Mencap nursery in Leeds area I think if that is near you. You sound like you just need to access some support eg a nursery place where they can start to help with some of these issues.
I would self refer to ed psych as well.
Not Sure where you are in Yorks. There is Abc parent group in Leeds and AWARE in Airedale.
It's unlikely he will just eat. He will need structured teaching programmes to get him to do things. But with good intervention can make progress. If you start the statementing process that forces their hand as then has statuory timescale so can speed up diagnosis.