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autism.....helppppppp!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

7 replies

moominmommy · 13/12/2011 15:23

hi there, sorry i am all new to this. i am in need of some advice. i am a single mum of 4, my husband passed 18 months now. my youngest son has just been dx with autism and i am not coping at all. i am so scared for him, and me, i am not sure how or what i should do to help him. I have no close family, my other kids are great with him but h is such hard work, i feel bad for saying that but i am struggling.....any help or advice would be appreciated. This is alien to me and i feel like i am out of my depth

OP posts:
moominmommy · 13/12/2011 15:32

sorry me again, i have just collected my youngest from school and i am so angry. people are so harsh, i cant stand the tutting, or the "i blame the parents comments" why won't people stop annd think before they cast judgement. grrrrrr

OP posts:
PattySimcox · 13/12/2011 15:36

Moomin, how old is your DS?

Is there any particular aspect of autism that you are struggling with?

Sorry to post questions in response to your questions but I'm not sure what advice you are after.

What I would say is that autism can present itself very differently at different ages and so what he is like now may be different in a couple of years.

moominmommy · 13/12/2011 15:46

sorry , he is just six. he has very limited language skills, but his behaviours have seemed to gotten worse recently. any advice would be grateful, how to cope anything. i am so scared and yet have known it in my heart for a while

OP posts:
amberlight · 13/12/2011 16:08

Hi Moominmommy,
You've had a heck of a lot to cope with...no wonder you feel like it's a huge struggle at the moment.

I'm on the autism spectrum. So are my family, and I work as an adviser on autism accessibility (though not on mumsnet - I'm here just as a mum same as everyone else).

Brilliant place to start is the National Autistic Society website www.autism.org.uk/ where there is a ton of info. There is also a helpline listed on there, who can point you to good local charities and services. There are often parents social groups etc where parents can support each other and 'let off steam' and share ideas.

Sometimes our behaviour can be worse for a while. Figuring out what's different that has caused it can take a bit of time, but it can be something that only we can notice.

Bit of background info about autism: (in case it helps) (all generalising, because we're all a bit different - but all of this has good research behind it)

It's a different brain design.
We're designed for fine detail, amazing persistence, incredible ability to notice what's wrong in a situation e.g. what's missing from a pattern.
We're ten times more accurate on work than other people.
We're amazingly honest about things and very loyal
We literally cannot see your body language - eye contact, face expressions, tone of voice etc is all 'invisible'to us. So we need really really clear words or pictures to tell us what to do or not do, and really really clear rules that explain exactly when to do it.
We're very routine-driven. We love things being just the same as they were last time. If things change, we panic. We need lots of notice of what's about to happen, so we can work out what to do and how to cope.
We do care very much about the people in our lives...but we're rubbish at working out how to say the right words and show the right expressions to prove it.
We often have sensory differences, so we can overreact to tiny unexpected things but underreact to really huge stuff. It's weird, but it's because of the different brain design. For example in a supermarket or school we can get totally overwhelmed by the amazing number of things to see, smell, hear, touch, etc and it literally hurts our brains so much that we want to scream or run or both. Social events do the same thing - it can be hell to cope with all the incoming social body language signals etc. It hurts rather than helps. So we play alongside people rather than with them, as it's less painful for us that way. We're not being antisocial.
Just some starter info. It's a whole new way of thinking, so it takes time to 'tune in'.
So many good people here to talk to.

amberlight · 13/12/2011 16:09

www.autism.org.uk/

PattySimcox · 13/12/2011 21:00

Advice = take one day at a time, fight for all the help that you can get and be kind to yourself as this is not your fault.

DS was similar age when he was diagnosed, although I had been asking for help after he regressed at 1yo. At the age of 9 he was on the verge of exclusion, violent, aggressive and a danger to his younger sister; he is now 13 and doing really well

His behaviour fluctuates a lot, but what you need to remember is that behaviour is usually a reaction to something, what that something is, is another matter completely.

DS used to run off a lot, before his diagnosis I must confess to having shouted at him and given him time-out etc; once I understood that there were things that he was afraid of / sensitive to, I was able to understand better and have strategies to help.

Having a school and extra-curricular activites that understand him and are willing to work with him / us has been pivotal in him doing well. And we are fortunate that he has managed to make and not alienate a lovely boy who has befriended him and sticks up for him. He is predicted good GCSE grades and with the right support is likely to get to further education and will be able to live semi-independantly.

Rambling a bit but what I am trying to get across is that the future that seems bleak now will not always be like that.

A useful thing for me was getting to know other parents with DCs on the spectrum, because they understand, and they don't judge.

AgnesDiPesto · 13/12/2011 21:24

There are lots of things that can help, but accessing them can be slow and difficult. Contact a Family website have leaflets on different ways of getting support.

  1. Find out if local support group / meet other parents.
  2. Apply for Disability Living Allowance if you haven't already - a local carers charity or Citizens Advice may provide help or advice on filling out the horrendous form.
  3. Find out if you have a local Homestart charity who can provide hands on help at home.
  4. Consider asking social services to do an assessment of you as a carer and your disabled child. People have mixed experiences of involving social services, but ours has been positive. From social services we get weekly direct payments to pay for someone to come and look after DS while we take the other children out as a family; a free babysitter once a month; a sibling group where they do activities and outings; holiday playschemes with specially trained staff. As a single parent of 4 I would expect you to get regular respite. Ask if the council operate a key worker system - a key worker would help you navigate the maze.
  5. Look at education options - this is a long haul so you have to be prepared for this battle. Is your son getting adequate support at school eg 1:1 from appropriately trained staff, regular speech therapy? If not you can ask school / speech therapy to provide more but often you have to apply for a statement of special educational needs to access this. See IPSEA website or NAS for info. You could also look at special schools or schools with ASD units. Finding a good school can take a lot of pressure off. If you are eligible for legal aid you may be able to get legal advice.
  6. If you are not getting direct speech therapy apply for voucher from Cerebra to pay for £500 private speech therapy.
  7. Look at the family fund if you need help buying items. An ipad with communication software / applications to help with speech is very popular choice right now.
  8. Ask paediatrican if any other help eg community nurse, CAMHS to help with behaviour / self help. Melatonin if sleep difficulties. Dietician if eating problems.
  9. Keep posting on here and tackle one thing at a time and post a thread on each one if you need help.
10. Are there any parents at school you can talk to? I shared the diagnosis with other Mums at school and ended up getting a lot of support with siblings that way eg parents will help with pick ups, look after my other children while I have appointments etc. 11. Keep hopeful, with the right support things will improve and your son will make progress.
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