DSD just diagnosed with Autism - Advice please.

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Hello everybody. My DSD aged 11 has just been diagnosed with autism. She already had a diagnosis of ADHD when her Dad and I met, and I have always felt having read lots on ADHD that there was something else.

Her previous consultant was not very good but as we have moved into a different area she has been re-assesed by a new consultant who although he had her previous notes, said he would start with a blank piece of paper and re-assess right from start. He was fabulous and like someone had turned a light on for me as I have been REALLY struggling with DSD.

I would like to ask if anyone can suggest where I can start to find advice and support for us, both for her, for her Dad and the other children in the family but very much for me too, I have felt rcently that I have been getting more and more down with life and seriously wondered if my marriage could survive but now I feel maybe I can find some answers of how to get through this. Hope that makes sense...I feel I have babbled on!!

This is a good place to start! I found the NAS helpful. They run seminars for parents/carers of newly diagnosed children called Help and help2, covering such areas as managing anger, sensory needs, sibling relationships. Local support groups can be very good too especially for local knowledge ( which school/ specialist/cafe/clubs are ASD friendly). Getting on their mailing list can be invaluable even if getting to meetings is difficult or not your thing.
In my area too it is common for hyperactive autistic children to get only an ADHD dx until middle or late childhood.

Hi-my 6yo DD has is hyperactive autistic too. I've just joined here and there's loads here. I got helped by a local support group- meeting other mums was invaluable

has your paed referred your dsd to an O.T.? perhaps she already has one. my ds has had his first O.T. assessment this week and the O.T. was wonderful, giving lots of ideas on how to deal with ds's sensory seeking issues.

londongirl4 - Hello. Did you find it easy meeting the other Mums? I am really struggling with my feelings as it is my SD not a birth child and I feel very alone. Infact I have just dropped the children off at school and am sat here crying as I type as I feel so sad, for her but for me too. I feel very selfish that I am thinking of my feelings and not just concentrating on helping her but I am so tired of the daily struggle and whilst I was so happy on Tuesday that the paed had found out another reason why she is like she is, I just feel so tired in dealing with it all. Her real Mum is useless and her Dad doesn't really see her in the same light as me. I have the day on day dealings with her (as I do with the other children in the family) and her Dad does say you have to live with her to understand her, how tiring she is etc but he also does not have to deal with as much from/with her as I do. He admits he can just switch off and she doesn't get him down. My own children don't like her much and there are days I can really see why (which again makes me feel guilty) and it hurts when she is nasty to my children, they didn't ask for this.

Also schools, hospitals etc always ask me (as the "Mum") about her, expect me to be the homework cop, the one who deals with any problems and I sometimes just want to say..actually she isn't mine and I have had enough ask her Dad, but then I will come over as the "evil step mum" which I am not,just very tired and very sad inside.

I had a violent previous marriage before meeting my DH and was so over the moon when I met my DH 6 years ago, now though I am really struggling with day to day life and just see myself as this total failure who can't get it right...again!!

Raggedrobin - The Paed has referred her to Speech and Lang people as he felt that although her speech is normal (well that she can speak is normal, not the actual words that leave her mouth often!) but that one of her main problems is social skills, body language,empathy, awareness of other peoples space etc etc. He didn't mention OT.

He also said he may have to refer her to different people about her eating etc, it is a major battle to get her to eat a full meal (I understand this is partly due to the ADHD medication being an appetite suppresent)and it can take over an hour to eat breakfast, an hour for packed lunch and the same for her evening meal. Whilst this may not seem a big issue it is a case of continually supervising her or she would not eat and would secretly throw it away. She is just scrapping in on the bottom of the height and weight charts and has to be made to eat. She puts her food in her mouth then drifts off into her own world, or chews and chews until I tell her to swallow it, or stuffs more and more in without swallowing whats already there,to the degree I have to tell her to not put anymore in or she will choke.

Which as I am sure you can imagine makes for long times at the table. Unless of course its junk food and thats eaten in seconds!!!

Our Ed Psych and Community Paed gave us info about support groups in our area. There is lots going on here esp for ASD but it does differ from area to area. NAS are very good and have a parents support phone line.

Thankyou imahappycamper - I guess I am going to have to ask for help and try not to be super woman! x

What area are you in? As well as NAS courses such as Help! they have branches too. Lots of areas now have groups and activities for parents of kids with SNs due to lots of money being about for all sorts of projects (no doubt soon to dry up!) and there are lots of charities too. I think you sound like a great Step Mum and very articulate at describing your situation and feelings, without sounding trite, that's a great start. You could also see your GP and be referred for counselling?

I found that the autism diagnosis did slowly allow greater understanding of my child. I am still working on it though!!
I am not a SP but can imagine it makes the situation and feelings all the more complex. I know I feel I have to be superwomen (I am not Ds BM either - different situation) and do all in my power to 'make up'. I have had to learn to pull back, and remember my own needs.
Are there any particular issues you need help with? Camhs (child and adolescent mental health services) may be able to help (via GP or paed referral) with tailored support. It might be wise to ask asd parents locally if their camhs service was helpful as some are better at understanding ASD than others from what I hear!

Just wanted to say hi buttons. My DS is 5 and autistic, and can relate to a lot of what you are saying. I have until quite recently also been a step mum for 9 years.

I think all parents with a diagnosis find it a mixed emotional experience. Relief at having an explanation, as well as sadness, confusion, overwhelmed, etc. I have found finding as much as I can really helpful. NAS website and helpline are good starting points. You can also join the NAS too.

How old are the dcs in your family? From a siblings POV, it may be helpful to explain the diagnosis if they are old enough and emphatic enough? There are some good books for children regarding autism (factual ones and also fictional story ones) which may be a good starting point.

My DS is totally uninterested in food too and I have to sit and say 'chew' 'now another bite' and so on - I feel your pain! If she is low in weight it is good she is getting a referral, I assume they will advise full fat milk, yogs, etc. Small regular meals and snacks, etc. Does she have sensory issues regrding food or just uninterested in meals?

Hello asilverlining. Thankyou.

She is just uninterested in food, I guess just finds the whole eating thing boring, due to the medication doesn't really have an appetite anyway, does very little physical activity to get a hunger on anyway (thats a whole new topic!!)and really just can't be bothered to eat unless STRONGLY encouraged to. I have had problems with this as we saw a locum Consultant a few visits ago and infront of her he said to me....well if she'll only eat chocolate cake then let her, at least its calories!!!!!!! I knew this was wrong and instead try to use it as a bribe for if she finishes her meal first but have doubted my parenting skills very much since meeting this man BUT the new guy we saw this week seemed very open so I asked his opinion on this and he was very supportive of me and infact sat SD down and "lectured" her on eating what I make her, that she cannot survive on chocolate etc etc.

I have 5 children living with me. I say children the eldest is 20 (step), then my DS aged 15, My dd aged 13, stepdaughter with Autism/ADHD aged 11 and my dd aged 10. The eldest two don't bother too much with how sd is. The 13 year old and her are either best friends or major enemies..not sure which is worse!!! and the 10 year old is my main worry. She is very quiet, sensible and easily the easiest in the family to live with. The 3 girls share a room (not ideal by any means!!) and I so wish we had space for separate rooms but merging 2 families doesn't leave alot of spare rooms!!!

Last night for example I read 10 year olds diary entry and it really upset me...she had a lovely day at school, she had a good laugh with her teacher. In the evening her sister (her words) was really horrible to her and what did she do to deserve that. I think she is writing like that so I will read it. She is really really supportive and kind to my DSD and infact at school they are in the same class at the moment but won't be from Sept and yet I know DSD upsets and hurts her and takes alot of time away from her and me which must hurt as to her I am HER Mummy. Its all so hard. I just find every day harder and harder and the sad thing is it is def starting to affect how I feel about my DH now. I know he and I can be so good together but the pressure of living in this family set up is really getting to me. Any suggestions??

NAS for sure! They are wonderful.

You can ask them about local groups too. We have one in our area which was set up by a parent of an ASD child and has blossomed, it is very much a community (self funded too) and so helpful.

NAS do a fab catalogue of books too, some aimed t parents, some for the child to read, it's worth a look.

Definately look into what support is available locally. Support groups for parents, training courses/workshops, family events, counselling services, mentor/befriending schemes (there may be some schemes that could mentor/befriend your DSD due to her diagnosis, and some schemes that support siblings) your local volunteer bureau/centre may be able to help with finding mentor/befriending schemes.

Your 3 youngest are quite close in age and heading towards (or already at) hormonal age, as one of 3 girls close in age I can tell you you would be having these troubles regardless of family set up and your DSD's autism. {sympathetic pat on shoulder} Definately give your youngest lots of cuddles and let her know how much you love her and how proud of her you are (sure you do already).

Have a talk with your DH, does he know how down and put upon you feel? Do you get any time out as a couple?

Welcome to the board. Has the paed suggested any help? Sometimes they build in time for you to get your head around the diagnosis and its not unusual to be "left" for a few months before they do anything. But you can ask about referral to CAMHS, autism advisory service (usually go into school), any counselling services for you, siblings and ASD child themselves. You can also ask for a social services assessment of you as a carer and the child - usually done by DIsabled Childrens team. They will be able to advise on benefits eg DLA + any respite / direct payments; leisure activities for your child with SN and for siblings etc. Some areas have schemes run by Barnardos eg holiday schemes etc. There is more available for school age children usually in the form of leisure activities and groups etc. Your local NAS should have all this info. Or your local Carers Resource if you have one are good esp re benefits

Going on some NAS courses as a couple would sound a good place to start.

Thank you everyone who has offered support and advice. I have spoken to my DH about my worries about our marriage and he says he isn't very good at reading my hints that I am struggling, I need to be more open when I am not coping well I guess.

I will also see what local support there is though I do feel uncomfortable with this with me being her StepMum not her Mum (although as she lives with me I guess under these circumstances I am her Mum) I wish I could find another Mum who doesn't find being a step parent easy and add the adhd and autism in too, I guess there will be others out there, its just a searching job

I have thought over the last few days and I guess its a feeling of isolation that adds to me going round and round in circles rather than airing how I feel, and so getting myself in a downwards spiral. I moved areas to live with DH and don't have any close friends here that I can confide in, I have made friends with other Mums at school but none who have lives even remotely lives ours. When DH and the children are out in the day I am lonely and wish there were people at home, then at night it explodes into a house over full and I am pulling my hair out and don't have the individual time or energy that DSD needs, or the other children for that matter. I don't work as I have disablities myself from having meningitis and scepticimia and so I feel rather trapped with a brain I know could do more, but a body that can't, plus with this many children someone needs to be available during the day for the amount of times we need to look after one of them off sick, or just be at school things. I don't have a support round me that could have them during school hours regularly if needed, so don't know how I could work even if I could find a job that fits in with my disabilities.

Thanks again everyone. x

Hi again buttons,

I really empathise with this comment: "I feel rather trapped with a brain I know could do more". Have you considered open university? It is something I am going to look into, simply for a bit of me time/ brain time. All sorts of courses in different subjects and levels.

There will definately be other stepmums in your situation, I agree it is just a case of finding them, do look into things locally. And keep the communication going with your husband too!

NAS, and you may find there is a local 'autistic society' too. There are loads of books - Tony Attwood is a good place to start, and I found 'How to help your autistic spectruym child' by jackie brealy (I think?) really useful. Take your time though, it takes a while to get your head round everything. NAS parentline was great - we spoke to a guy for a couople of hours. He was a star. Oh, and there's all of us lot on here, of course!

My DS has ASD, too. He's a pre-schooler. I'm not an expert compared to some of the folk on here, but will try and help if i can :-)

Hi Buttons. I am impressed at your ability to think through your feelings and communicate!
I too can empathise with your comments regarding your underused brain (I have a dodgy body too)- and the day time loneliness/overly busy evenings! I think isolation is a common feeling when parenting a child with sn. After many years of feeling very isolated I attended a course for parents of sn children run by our local parent carers group. Our children are all different but the isolation and struggles with the system to get support for our children were strikingly unanamous! Actually the fact that our situations are different does not matter too much. I have often wished - and searched for other mums in my situation but have found this mixed group supportive.
My DH struggles to read feelings so needs to be told in black and white - something I find difficult.
Good luck with finding support that is right for you.