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Severe or mild Autism? Any advice xx

(8 Posts)
Blueslim Thu 02-Jul-15 23:04:43

My 3 year old daughter has just been diagnosed with autism. She has a younger sibling who she can't physically share with. at the moment I can't even have them in the same room because all I hear from my 3 year old is high pitched screaming meltdown every 2 minutes and my other child crying distressed and confused as to why she's not aloud to touch anything.
I'm at my wits end I constantly feel stressed and on edge and I'm contemplating going to the doctor for anti depressants to help me deal with it. I do get a break when she goes to nursery twice a week which keeps me sane! I want to live in the hope it will get better I'm not sure what my daughter will be like in a few years but she gives good eye contact gives cuddles and kisses says some words and phrases and is trying her best to learn more, she still flaps her hands when she's excited and occasionally runs around in circles she can be very disobedient with her dad but not as much with me. If it was just her on her own I could manage her easily but she is awful to her sister.
I asked the paediatrician if she was mildly autistic (hoping that one day she would be relatively normal) but I was told due to her lack of communication we are looking more at severely autistic, this has come as a massive blow as she doesn't seem that bad to me? Any advice or words of wisdom appreciated! Thanks xx

Cedar03 Fri 03-Jul-15 12:43:21

Sounds really hard for you. Have you looked into the national autistic society - they have support groups for parents and their children - as well as loads of info on their website. My nephew is autistic - he is high functioning but does need extra support with lots of things around food, social stuff, change, etc.

At 3 he was having speech therapy to help with his language development because he had delayed speech. They had special image cards to prepare him for what was happening during the day (so one had a picture of food, this was 'lunch' for example).

My SIL went on a course which helped her to understand how autistic children think - it helped her enormously to see how his behaviour was different. I think this was run through the national autistic society. I'm pretty sure there will be info out there that can help you with the siblings issue. (My nephew is the younger child with a bit of an age gap so different sibling problems).

It is going to be hard right now because you have two young children who are nowhere near the age of reason. I think there is a section on this website for special needs children - I'm sure there will be people there who can give you much better advice.

Pomegranatemolasses Fri 03-Jul-15 15:38:47

At this stage no one can predict your dd's future. She is very young, a d you have done the right thing by seeking a diagnosis.

With all the interventions available today, it is possible for your dd to progress hugely. The special needs boards here are a great help.

CrohnicallyAspie Fri 03-Jul-15 20:20:06

It doesn't make sense to classify it as mild or severe autism, or to use 'functioning' labels (which are supposed to refer solely to IQ, but people use them to indicate whether someone needs support or not). Every autistic person has a unique profile with different strengths and weaknesses. We might need help in one area but be completely independent in another. I live independently, have a job etc, but still need my DH's support to prevent me hurting myself during a meltdown.

How old is your other child? I know some autism charities offer support to siblings. You could also check out your local sure start, my local ones have support groups for families of children with SNs, and have sensory rooms you can use, access to courses, that sort of thing.

MisForMumNotMaid Fri 03-Jul-15 20:34:37

My DS1 (11) has Autism. He's high functioning, by that I mean he now has good language, and a high IQ, and his IQ enables him to develop coping and managing skills. He has a younger brother DS2 (9).

When DS1 was 3 and I was first told he had Autistic traits and started down the diagnosis path my now XH walked out at that time so I had daily (and nightly) DS1 at 3 and DS2 at 1 battles.

I remember with tears in my eyes reading your post the exhaustion of 3 and 1. I can assure you it does get better, it will get better, you will find coping strategies and so will your DD. She will never not be Autistic but the amount it effects her only time will tell. As with any three year old her life is in no way mapped out

Right now its important to manage you and get all the support you can. You need to put yourself first because your strength will carry you all through.

Are you getting DLA, carers allowance, enhanced tax credits, direct payments, respite care?

Do you have an Education, Health and Care Plan (EHCP) in place for nursery and for when she starts school?

When my son was being diagnosed we had a lovely psychologist who gave various bits of advice two that have really stuck with me are:

1) with a high needs child like an Autistic child is, the time you give them can never be enough so holding back just alittle for yourself is not going to make a difference to them but will make abig difference to you (and your relationship with your DH), which in turn makes you more able to deal with them.

This little sound bite ment i felt less guilt putting DS1 in nursery for one extra session so I could sleep/ have a bath/ shop/ do those things that just become so difficult when your time is spent just managing your DC. It also gave me some precious time with DS2 who I put in nursery for the morning session but not the afternoon.

2) Bad behaviour is bad behaviour. It doesn't matter if its bad because of Autism or age related tantrum if its unacceptable to you it needs to be managed. Autism isn't an excuse its a reason/ explanation but doesn't make the behaviour acceptable. Now this could be taken as a criticism of parenting but all parents set their own parameters for house rules. With Autism learning thecorrect behaviour or management of the situation may take far longer so you choose your key target areas and prioritise them (choose your battles) but you can get to apoint where you're happy with your behaviour standards.

A lot of Autistic meltdowns appear (in my non professional opinion) to be due to over stimulation and frustration in communication/ miss communication.

In her nursery/ childcare provision environment does your DD cope with other children near her? What are their management strategies - they deal with a whole range of behaviours and maybe observing and discussing how the manage your DD could help you to mirror the strategies at home.

In the situation where your DD gets very frustrated with her DSis is she surrounded by noise (i.e. TV on) lots of colour, smells, toys etc?

DS1 has always loved timeout (he used to say yes please to the naughty chair at school when he was main stream , with full time1-1). Now obviously we're wiser, he's older, we realise that if he's becoming hyper stimulated he needs to decompress i.e. Go to his low stimulation room and calm down. Its not a punishment its a slow pressure relief that he relishes. At a younger age various strategies can work i.e. a covered playpen den, where the child can shut themselves into a darkened padded space or a pop up tent in a corner that they are allowed to go to and its a safe space where within reason if they go there no one disturbs them.

It is all a lot to take in and your DD's childhood is a journey in its early stages. The National Autistic Society really can offer all sortsof support. If you register online they'll send you agreat big pack of information to puruse at leisure. You'll also get the contact details for the local NAS where you can meet up with people locally toyou at various different points in their journeys. These parent contacts are invaluable. They can signpost you to local services and most importantly get where you're coming from with the highs and lows of living with Autism.

NessaWH123 Sat 04-Jul-15 23:08:18

Can you possibly tell me the triggers and signs you saw to check for autism as im unsure with my 2 and half year old whats wrong amd noone is intetested still in the nhs. Thanks

Goldmandra Sat 04-Jul-15 23:31:52

There isn't a good way to gauge how severe a person's Autism is or will be in the future. Profiles are so different and vary in such an enormous number of ways that you can't compare. Someone who looks very different can be less disabled by their ASD than someone whose behaviour appears to be socially appropriate.

My DD2 has a diagnosis of AS. She is highly intelligent and verbally articulate but also very anxious and rigid. She's also exceptionally good at masking.

Her head teacher in Y3 wrote a report stating that she had no additional needs and the root of her 'difficulties' in school was bad behaviour and me allowing her to manipulate me.

She is now in Y7 and in a small independent school funded by the LA with one to one TA support, weekly SALT input and weekly social skills lessons and her CAMHS practitioner says she is one of the most complex and challenging cases he has come across. There is no hint of a suggestion that my parenting is to blame.

Children can change dramatically as they mature. Try not to focus on the future. Your normal won't be normal for other people but it will feel normal to you. Other people's lives will be different but they won't necessarily be better.

There are aspects to both of my DDs' personalities that are recognised parts of their AS that I value immensely and I wouldn't change either of them for the world.

chocnomorechoc Sun 05-Jul-15 14:38:41

at 3 it is really difficult so say how much she will be affected in the long term. It is a difficult stage with children with limited or no language when you don't really have a gauge as to what extent e.g. learning difficulties are present.

nessa there are various signs but if you are concerned google "M-chat" . this is a screening tool and if you child scores in the risk range I would discuss this with rhe HV or GP regarding a referral to a dev paed.

but I don't think there is such a thing as 'mild autism'. to get a diagnosis one must be quite profoundly affected regardless of IQ

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