My dear 3 year old is just starting the stages of going through the tests for autisum! Called in the health visitor when she was 2 and she tried to say it was excessive temper tantrums and i knew there was more to it than that! So i had to push and push it through my dr, and now something is getting done I have washed my hands with the health visitor now because the testing could of started 12 months ago!

There are several groups on Face Book which may be a good starting point
Good Luck
x

thanks will take a look

Hi

I have 2 autistic boys, ones 17yrs old and my little one is now 5yrs old. J (my little one) went under assessment having Speech and Language assessment when he was 2 & 1/2yrs old as he was non verbal & echolalic. We then went onto being referred to SESS (Special Education Support Service - consists of specialists with the Early Intervention Teams, ie portage, portex (ASD Specialists), education psychologists and peadiatrics). And then a further referral to OT due to his (lack of) co-ordination skills and hypermobility. (they helped with equipments)

He was eventually officially diagnosed when he was 3 & 1/2 yrs old, and is now attending a specialist school (which is an amazing school).

If theres someway I can help you with advice, please don't hesitate to pm me
Theres also a forum that I try to help alot on called ASDfriendly its a support group for parents/carers, from diagnoses to helping on the education side of things (getting statements etc.)

[quote=Snickas]

He was eventually officially diagnosed when he was 3 & 1/2 yrs old, and is now attending a specialist school (which is an amazing school).


Which school is that, my sister has two autistic boys who go to hayfield in upton. They are aged nearly 8 and one of 10.

Yeah he goes to Hayfield.
And my other son goes West Kirby Residential school as a day student.

My daugther doesn't have speech problems but she is being sent to speech and language. She is a tippy toe walker, and has hypersensitivity to all senses and for the love of trying she is still in nappies and she is 4 in october! she also has milk,egg and wheat allergy. She is in foundation 1 in christchurch primary school at the moment.A new health visitor and staff nurse has got involved now and there getting the autistic society involved and are doing team around the child, portage are getting involved when she returns to school in september

My little boy has Sensory Intergration Disorder, which sounds familiar to your daughters hypersensitivity to all senses. Theres a really good site all about it Here - Sensory Processing Disorder (its american because UK hasn't quite caught up in terms of SPD yet, as in there is no therapy on the NHS for it yet, but OT can diagnose it as ours did but couldn't do the therapy) . We had to get a safespace installed for J's bedroom because of the levels of his SPD.
He was also in nappies until this time last year (was 4 & 1/2 then). He just took to it, in his own time, with no pressure from us. Its so hard, I know I felt under pressure to get him toilet trained asap especially in nursery because the peers in his class were all toilet trained...but given his own time to do it and he eventually did.
Wirrals Autistic Society are great! They keep us in the loop of any clubs etc going. They also do a parent course called Early Bird, which was a tremendous help for us. We learnt to use PECS (picture exchange cards/communication) there.
TAC meeting should help you alot, when we had ours, J's pead came (as well as everyone else involved in J's case) and once it was confirmed everyone had the same opinions that he was on the ASD scale, he was diagnosed and then it was decided we were all in support of a statement to get J into Hayfield.

It sounds like you have the right people involved. Our portage was an amazing help to us, very supportive, hope yours is too
Have you heard about MACS? Merseyside Autistic Childrens Society? They hire Adventureland (New Brighton) and Europa Pools exclusively for Autistic children and their families? We go every month, I can pass you on some dates and contact details if you want

yes please! we found out our daughter loves the baths when we went on holiday this year but can't take here at the mo as its free swim because of the holidays and she can't cope with the noise!

Oh I know exactly what you mean! J could/would never be able to manage/cope with all the noise and splashings any other time. My other son would never go again if he saw anyone looking in his direction! But he loves it just as much as his little brother
You'll love the MACs sessions

MACS
Royal Standard House
334, New Chester Rd
Birkenhead
Wirral
CH42 1LE

Telephone
Office: (0151) 644 1191
Mobile: 07546233694

Or just come along to one of the meets, next Adventureland session is 6th August from 6pm-8pm (mine love it there, they can just run and bounce for 2hrs non stop and not have to queue to go on anything!). They do it every 1st Staurday of ever month and it costs £1.50 per child.
Next Europa Pool session is 14th & 28th August, they do these every 2nd & 4th Sunday of every month. From 6.30 - 7.30pm but the cafe stays open til 8pm so you can grab a cuppa (or chips for the kids). It costs £1 per person (swimmers & non-swimmers).

To join MACs properly (first session isn't a problem as they know and understand that its dependent of the kids and you can get details etc) its £15 a year for the whole family. When you consider how much it would normally cost to get in Europa and adventureland....
They also do trips throughtout the year as well. We went to Rhyl's Suncenter on Thursday (exclusive to just MACs members) and we went to Chester Zoo in Easter hols and they only charged £15 per family and that included coaches as well!!!

forgot to say, MACs is a parent ran charity, so they are wonderfully supportive and they just know what its like

Thanks very much Snickas you have been very helpful! just looking on the asd site now about help with filling dla forms! it is such a scary form to fill in and its been sitting there for a week and a half as i tried the welfare right would help and phoned up and they said no! will read up on it on the asd site and see if i can make any sense of it lol!

If poss try and get in touch with the resource place in New Ferry, it's not called that really but unsure of proper name, it's opposite Port Sunlight Legion and they are brilliant with DDLA forms and will go to any appeals with you. I will try and pm you the number for them later as they do the form by appointment only but well worth it and it's no charge. They helped with our daughter's autism dla claim about 8 months ago.

DLA forms, what a nightmare You have my every sympathies, i'm still traumatised from doing J's
Cerebra do a guide book that helps so much when filling in childrens DLA forms. The link to the pdf format is here . Its a great guide that helps you to word it and explain it all so well.

Just tell them the honest truth of how much hard work it is, of every littlest thing, the more info you give them, the better. Even give a complete breakdown of getting up in the mornings to finally getting them into school...I know here, every item of clothing has to be negotiated, 20mins to get a sock on, another 20mins for the next one and so on...

If you get really stuck on a question, give me a shout, I might be able to help (have been filling them in for over 13yrs now).

my 10 year old daughter was diagnosed with asd in April,she's in a mainstream school but she gets a lot of help.I was told by another mum who has an autistic son in the same school to claim for dla although not everyone gets it first time round,I was lucky I got mine through the other day.Filling the form in was mentally tiring & some of it was repetetive but filling it in made me realise the time it takes in looking after my daughter.we had a meeting with Steve Vasey from wirral autistic society & he was a great help.My daughter loves computers so she now goes to a computer club run by the society in Bromborough which she loves going to.

Hi Starakita, i have met Steve Vasey the other week in the dropin centre he is a very nice man!My daughter is 4 next month and she only plays with consoles or computers as she needs things that are mentally challenging she won't play with any other toys! It is hard work my daughter has bad major melt downs that i find hard to cope with as she wont be cuddled out of a melt down you have to let it burn itself out! also her sleeping is terrible too so dont think that helps with the melt downs! she has been on phenergan the dr perscribed but not much good at all!

You should join Steves mailing list, hes the one that keeps me up to date with anything thats happening for our kiddies (clubs, respites, etc). Give me a shout if you want his email addie and don't have it already.

I know exactly what you mean misty, my little boy is now 5 and he is obsessed with Little Big Planet and Sackboy's his best friend we use it as a reward with him for achievements. If he eats all of his dinner, he has 30mins and so on. Its worked well for us so far.

My 17yr old used to have the most horrendous meltdowns..he used to have about 7-10 a day.
We could never stop them and everyone else in the house would get injured. In the end, we made his bedroom into a huge soft area, full of beanbags, cushions, low lighting lamps, loads of fiddle toys, etc. Its helped loads...as soon as he gets home from college (did this when he was at school as well), he'll just go and chill in his soft corner for a couple of hours and reflects (process's) on the day and then hes fine.
Do you think a soft corner could be something that might work with her? the goal is thats its just somewhere where she could have her meltdown and you would know she can't hurt herself there.
My little boy has a safespace, which is an absolute godsend...

am surprised GP/pead gave you phenergan for her...have a look at melatonin, its meant to be alot more effective for our kiddies.

try sure start childrens centres as well they run a drop in centre on fridays in brassey gardens birkenhead on a friday afternoons for help and information .try your local centre they might be able to help .

I don't think the dr will give the melatonin for her until she has a full diagnosis as she is still going through it! Might ask the pead when she is there in Oct! I dont think it works as she is very restless through the night when she takes it i makes her sleep but her being restless i dont think its right! She has slept through 5 times in 3 years and two of those times was phenergan!

hi mistybluered your daughter sounds like mine used to be she took ages getting out of nappies we knew she could do it she was just being stubborn. she has hypersensitivity hates her head & ears being touched, ive been bitten & kicked trying to brush her hair & she'll only hug on her terms. She's not on medication she sleeps at night once we get her to bed its difficult getting her up in the mornings on schooldays but she's up early weekends & holidays. After our meeting with Steve he said we were doing most stuff right we have easy days then we have hard days but we get through,the next big step weve got is secondry school Im worried about how she'll cope but her brothers will be there & hopefully some of her friends will be in her class.

hi there i have a 4 year old daughter who is in process of being dignosed with asd and adhd now also, she has been on melotonin now for about 5 months and it is a godsend as she just didnt want to sleep attal, it has been up to the 2 tabs now one of which is the slow release as she has started to wake up at 3am refreshed, i am not members of any groups yet as she is not fully diagnosed so dont get much in teh way of support, i have met steve and am on his mailing list and find some of his emails very useful, i am stuck in limbo at the mo as she not dianosed so dont any thing in the way of help as am jsut being told no one can help till she is dianosed so me and her dad are coping alone, it can be hard at times eapacilly when she has blow outs as she is getting more and more violent now but we dealing with it well just about lol, trying to brush her hair is murder, but reading above it is a sensory thing which no one told us about either, she absolute loves being in water in pools and swimming when we were on holiday, she is still in main stream school and am hoping she will get to stay there as they deal with special needs in the school in other diff forms aswell as autism.

hi mamabear we were in the same situation my daughter only just got diagnosed in april,after having 5 other kids Iknew she was different not at first though, although she was late walking talking potty training she used to have long hair but as she's got older she got worse with the hairbrushing so she has it short.my daughter also loves swimming & being in water, she loves going to haven for holidays although her brothers aren't as keen anymore. The school she goes to have been great they are very supportive.were on Steves mailing list but my daughter just goes to the computer club which she loves going to it is tough at times but im glad someone started this topic because it does help to talk to other people in the same situation.

Think i will get on to the pead this morning to see about the other form of medicine instead of phenegan as her doctor doesn't really want to give it her for some reason and i don't like this phenegan as she is restless all night! i find her meltdown are getting worse as she gets older and stronger! She also loves swimming but it takes two people to get her in the bath and washing her hair is a nightmare! she ends up with rats tails in her hair as it is a fight to brush and as for getting it cut short she wont go the hairdresses and she won't let me do it either!

I know the hair is a nightmare I put the shampoo on & let her wash it she's started brushing it herself but she does'nt do that good a job so its still a battle trying to finish it off. She's not to bad at the hairdressers although you can see she's not keen.I never realised how hard it was till I had to fill in a D L A form that makes you realise how difficult it can be & filling it in you have to base it on the worse day you can have. I was mentally tired after doing mine & it took about 2 hours.

Ask for a referral to Occupatonal therapy so they can do a sensory profile test. It would help alot in terms of getting a diagnosis plus what is effective in being desensitized.
My youngest was so hypersensitive to textures/clothes mainly, it was horrendous getting him changed. We now only use the same textures ie cotton and its helped loads. We also use a therapy peanut ball (its like a big gym ball but peanut shaped) that has knobly bits on it and that has helped so much in making his legs alot less sensitive to textures (we tried to get t-shirt material pants but they're so thin, not ideal during winter!) and he can now wear tracksuit bottoms without being highly distressed and uncomfortable.
Using similar tactics can also help with a sensitive scalp (hairbrushing).
I'm in the middle of a Sensory Intergration course so I can pass on alot of addies on how to learn more about it all.

SPD - Sensory processing difficulties is still relatively new in this country, as an effective therapy. The sad thing, is once they are diagnosed with SPD, the NHS don't offer any therapies to help our kiddies manage with day to day difficulties. That was why i started on a course. But if you can get a SPD diagnoses, theres so much schools can do to ensure our kiddies are in a great environment that can adapt and accommodate our kiddies needs to ensure they do stay in m/s education.

with the hairbrushing I saw an ad last year for the tangle teaser hairbrush it has helped a bit also using a hair conditioning spray,I also found wilkinsons own shampoo is really good,it doesn't stop the struggle of the hair but it helps.

Just thought I'd mention that we had a bad experience with anti-tangle shampoos, it caused a lot of hairloss in our daughter, not obvious dropping out but it went a lot thinner with regular use and came back when we stopped using it. Apparently it doesn't happen to everybody but worth keeping an eye out for.

I only use it once a week & my daughter has got thick hair but will keep a check on it thanks DD

Resently bought the tangle teaser brush your talking about and she wont let me use it on her as its a change of brushes i use it on my other daughter instead! I find the tangle spray makes the hair greasy so try not to touch it!

My 3 year old son has been diagnosed with autism and we had to battle and battle to get a diagnosis. We still have nightmares about those dla forms but our portage worker helped us fill those in. The melt-downs are hard to deal with, the worst thing being in public when you get the disapproving "control your brat" look off people! He is in Ellary park now and in the short time he has been there he has come on a great deal.

Yeah, i totally know what you mean as I'm sure the other parents do too.
strangers are always quick to judge and cast out their dissaproving looks, what they don't realise is that our kiddies are very hypersensitive to the world around them, people around them and they are fully aware that people are staring at them, which makes them even more anxious, panicky, stressed, hysterical...its a no win situation, heartbreakingly so for us.

I went and viewed Ellery Park when i was looking at schools for my little one, its an amazing school Sir . I hope your little boy continues to flourish under their guidance

hi im hoping one of you can help ive been trying for a long time to get my daughter help she is now 11 after doctors deciding she did not have adhd they have put her through many tests but not the aq test which i found on line and asked her to do she scored 34 which if what i have read is very high it has been many months since her last appointment and quiet frankly im at breaking point
any advice would be greatfully recevied

hi there

what are school saying? are they supportive in getting help or does she have any IEPs, etc?
Try not to take the AQ test too seriously, I took it and I got 37 on 3 different occassions!!! I swear it hates me
My aspergers son took it and only scored 17 if you met him, you would find that absolutely hilarious, you can't get anymore aspies than he is, really.
My dd would probably score highly too as she does have many traits BUT shes learnt to live with it and stand her ground (not that I'm saying thats the answer) and shes managed to do really well through her gcses with no additional support.

You really need to have someone else, prefably a class teacher or a professional who has seen the child for a significant while to sort of confirm your findings/write a report before they usually do any referrals to any professionals.
And then they will have a barrage of assessments and then agree to all meet at a multi-discplinary meeting before making any kind of a diagnosis. They usually need to have everyone (pead, ed psych, CAHMS, OT, SALT, any behavioural specialists, etc etc) agreeing with the same diagnosis.

Sorry its not a positive post for you

http://www.channel4embarrassingillnesses.com/features/take-the-autism-test/

I got 19

Just an update my daughter has been on melatonin now for a month and it has been a godsend she is still having her meltdowns but the dont seem to last as long! Had a tack meeting in the school and the teacher has told us she needs permanant one on one! So portec is getting involved now! She has an appointment tomorrow with the incontinent nurse to see if i can get help as she is 4 now and still in nappies and she is perminantly in night time nappies as the largest nappies no longer fit and £3.00 for 10 nappies dont go far! Update you all tomorrow with what they say!

Mistybluered

Yayyy for finally getting some help and support that you need.
Did they decide at the TAC meeting wether to put in for a statutory assessment (first rung on the ladder to getting a statement)? As getting a statement would ensure and pay for dd to always have the same consistent 1:1 supporter.
Our Portex was fabulous! She helped to make sure we got everything in place for my little boy, including assessments with OT (to get his Maclaren Major Needs buggy and to having specialists equipments installed around the house). Ours was based with SESS (special education support service based at Bromborough) so she might be the same portex we had.

We also we got the free nappies from the incontinence services (you get them in bulk whenever you need them, you just ring up, give them your customer number (which you'll eventually get when accepted) and then they deliver them within a day or two).

How did you do with the DLA forms hun? Portex will be able to help you with them in case you didn't get far...

Never had a very good christmas as daughter didn't like the hype! anyone mentioned Christmas she would have a meltdown! She didn't want presents off Santa she didn't want the tree or decorations up! But come Christmas morning and she seen the presents and opened her presents she seemed to settle down! I have never found it so hard to buy presents for my four year old! As she doesn't play with any toys except console games as it is mentally stimulating for her! But we already owned all the consoles that were out! But she seemed happy with what she got lol! Christmas is very stressful normally but having a dear daughter with her problems makes Christmas twice as stressful

have you considered buying her a pet, couple of kids by me are autistic / adhd they love to come and play with my dogs. maybe next year she could be involved with buying presents for her pet, wrapping them and maybe decorating the tree for her pet.
just an idea, hope its of help.
welcome anytime to introduce her to my dogs,

I have had 3 dogs and she never bothered with them and the 3 dogs ended up turning on her do I had to rehome them! Also I tried with kittens and she started to throw them over the banister! Luckily she never hurt them so I had to rehome them too! So gave up in the end!

Hi snickas, never got on well with the incontinence nurse as she wants to try and get her out of them so I think it was a waste of time! Portex called in to see us at home just before Christmas! I have another tack meeting with them all at school when they go back to school! So fingers crossed we might find out more then