Bit lost after paediatrician says likely ds has asd but got to wait a few months for diagnosis .

[SadieChanges]

Previous thread here . At the appointment she said they would contact the health visitor but I have heard nothing and it was 2 weeks ago tomorrow. I have no family here and friends are nice but not very close. I was told there was no point with support groups as I don't have a diagnosis yet.

I ordered more than words and it takes two to talk , they have arrived so will begin reading when ds naps. He seems to be getting clumsier and hurting himself by having accidents , also he has started squealing and getting very distressed with big tears out of nowhere which I find very upsetting , I just hold him close and then when he recovers a bit put a nice tv programme on or sing a fave song. I have noticed that when we have a family day out he is much happier , I think he needs lots of excersise and loves collecting twigs , he flaps his hands less then too.

Anyway should the health visitor contact me, she is quite bad gave me poor bf advise and didn't know how to chase up a referral so I had to go to gp with both children after 13 weeks to ask why he hadn't been seen and got call later that day with appointment date! What can I do to help him? I asked the doctor and she just said keep interacting but nothing in particular. There are autism support groups in my area but do I have to have a diagnosis ?

Feeling low today my ds is nearly 22 month and have a 5 month dd. Thanks for reading.

I would go to the support group anyway, it sounds like you need to be around people who know what you are going through.

The people at a.group will have loads of experience to and will be able to make recommendations of what to do next.

Try to get out everyday if you can it is harder if you are stuck in the house.

Good luck

give your local childrens centre a call, often there are groups for children with Sn that caters for all & many children will have no specific dx.
Although most dont run during the school holiday so you amy ned to wait a couple of weeks.
Give your local NAS group a call, contact details should be on the NAS website, not sure if you need an official dx but i've never been asked for proof & sounds like you've ahd a verbal dx.
what area are you? maybe someone on here can point you in the direction of a specific group.

Thanks for both your replies , would parents of children who are diagnosed mind me coming to a specific group though . I'm also not sure if others like my mil would agree with me taking him as they think he has no major problems and think he will start talking/pointing/waving /understanding before the next appointment . Which actually when you are desperately worried isn't much help as you can't discuss your concerns as they are brushed aside.

Also I suppose I'm a bit scared myself of there being severely autistic children and then as I have read autism means you lose skillls I will be seeing how ds may be in a few years . I feel shit for thinking like that , of course . It's getting harder going to his groups though , he pays no attention and just goes off on his own , has massive meltdowns is things don't go exactly as he wants. I get the look from other parents as if to say " what a naughty boy " but I know full well he doesn't understand what is expected of him. I play along and tell him off though .

I have found a local support group just now, so I could ring up and see what they recommend.

every other parent in a sn group has felt as you do at the moment, the best thing about our sn group was that it was totally non-judgemental. I saw children similar to my ds2 & children who were nothing like him.

Give them a call or just go along.

I went to a NAS group without a dx and everyone was lovely. Everyone had been in the same boat. I even went on an Earlybird NAS course with two families who didn't have a full dx yet.

You can self refer to SALT if this has not been lined up already - there may be a SALT drop in at a children centre. If your HV is rubbish then what I did was go to a drop in HV session and saw a different HV!

You can also self refer to portage usually if you have that in your area (play therapy). Look on council website. Do you have any parental supporters etc at a local children's centre?

You can also start looking if any specialist nurseries or units locally. Often the best support is from specialists. I wasted a lot of time chasing SALT and autism outreach in mainstream nursery and then when I got some realised they didn't know any more than me. One saw I had the More than Words book and said just read that and never came back!

You really really don't need dx to take your child (or all of them, younger sibs welcomed too) to an SN group. The parents there will be the most non-judgy you will ever meet. They are also a useful source of information and support. At ours there is usually a support worker from the local autistic society present as well. They are very helpful regarding resources, additional activities, the diagnosis process, etc.

Don't bother about what your MIL thinks. She is not your children's parent, you are! One thing you will find about SN groups is that your concerns will be taken seriously, and that all the parents understand exactly what you are going through. I take my DS to two each week (there are many more in our borough but I can't take him to them all) and I'm really going to miss them when he's in school full-time.

Our groups also run through the holidays, the only difference being older (NT or not) siblings who would usually be in school are welcomed too.

I'm glad to see you've found a group, do go along. You really won't regret it

Go! DS didn't get a diagnosis till a month off 8 & during the LONG wait I'd have gone under but for the advice and kindness of other parents. Even now 9 times out of 10 the help I get from here & IRL from my peers is far more helpful day to day than the "professionals".

Thanks all, I emailed a local group , she emailed back and today called and told me all about the help and support they give. There is a support group in the week , so I will go to that when it starts in Sep as the holiday one is quite far from me. I feel so pleased that I did something now . She said to call her anytime if I have questions , she would have done a home visit but both dcs were asleep ( v rare ) so went through it all on the phone . They also help with education support and getting access to things that will help ds. I will be nervous but I am looking forward to the support group.