Felt let down by nas seminar on women and girls with autism

[autumnsmum]

Happy st Patrick's day everyone Just a little moan yesterday I went to the nas south east members seminar on asd in women and girls . I left feeling totally excluded no one had a dd like mine . Everyone had dds who were very high functioning , I have a dd who is being statemented and may go to ss or a least a unit . I realise it wasn't the organisers fault but I left feeling more depressed than when I went in . Thank god for mnsn which is the only place I have met people in a similar position to myself.

Thank you sallybear that was really interesting .My dd is probably closer to the child at your sons school although she can speak .i do believe it is hard for everyone who has a child with an sn or an sn themselves or both.

It is hard. I hate the "you deserve a medal" or the "poor you, you don't have it easy" comments. No I don't, but it is what it is. We make the best of things, celebrate the small things like they were major victories, because in reality they are. DS4 likes to amuse himself by doing funny things, and though lying on your back and spinning slowly round must look odd, if he's happy then I'm happy.
I feel very blessed in a lot of ways, but I worry for their futures.

It's a problem. I used to go to an NAS group but most of the other parents have high functioning kids and I would end each meeting feeling more depressed really.

I did talk about setting up different groups aimed at different parts of the spectrum. But that seemed a bit unacceptable to many - partly I think because people became defensive about what was 'harder'. I wasn't interested in what was harder or more difficult - couldn't give a monkeys, but the reality is my son does not share the same problems as a child with AS, we're dealing with a completely different set of issues, a completely different set of needs, and we're aiming for totally different outcomes. A support group discussing the stresses of GCSE's isn't that relevant when your child can't write their own name (and it wasn't as if I could offer any advice, my NT kids who will be doing GCSE's are younger). Likewise a support group discussing methods of AAC or nappies isn't going to be that relevant for someone with a child with AS.

I used to volunteer for the NAS but left when one of the head office paid workers got stroppy because I said I couldn't help out at an event which was unaccessible to my son (he seemed to think I should pay for childcare for my severely autistic son - from whom I not sure - to go and support families with hug functioning kids who would be bringing their children along - it was a family event). Er no.

Oh and then the NAS befriending person paired me up with someone who wanted to 'take a child to a coffee shop to have a nice chat' and seemed completely stunned when I said my son son couldn't talk so it didn't sound an ideal matching. 'What? Not at all? So how does he communicate? He must sign or something' Er nope. This was from an NAS employee!!!!

Yes but jimjams, you met an idiot

Oh I know but there seemed to be a whole run of meeting idiots. The head office guy seemed just a clueless.

When the befriending coordinator came to visit she was over an hour late. I mean what do you never do to an autistic child?

I think that is absolutely shocking saintly.

Saintly, my jaw is on the floor. How horrendous!

I would say that families with lower functioning kids do have it harder in the physical sense, trying to restrain youngsters, keep them safe from harm, the level of restriction and dealing with basic self care measures in, say a 12yo boy. That is surely one sort of struggle which families of higher functioning kids do not have. Higher functioning is maybe more about 'management'.

My son is AS and in truth he is generally quite easy to manage, luckily he is not especially rigid. However with his selective mutism overlaying his aspergers his functional communication skills are within the worst I have seen in autism- probably joint worst in hf kids. He cannot order food in a cafe, buy things in a shop, ask for help if he gets lost, talk on the phone...in those situations, or any situation that means interacting with anyone outside his small group of friends and 'safe' adults, which is basically me, his dad, and one of his grandparents...he is basically without speech. It is heartbreaking that he can speak and yet is so crippled by anxiety that he is literally rendered unable to speak by being with people. He doesn't really struggle much with new situations, his main fear in life is people. He isn't oblivious or 'active but odd', he lives everyday in acute anxiety about communication and how to communicate, having to communicate. I can only imagine what that feels like. He is eleven and a half. I guess for me day to day management is easier, but there is still heartbreak, and I think that is true for all of us who had one vision of having children and ended up with another, whatever difference in expectation that may be. Probably most of us would not change our children, but we would wish their lives easier. Weirdly, and I don't know why this makes any difference, I find solace in knowing my ds was and is and always will be autistic to his core, from birth. I can't scrape away the autism and there is an NT boy inside struggling to get out. The cases I always find especially sad are the ones where a child's life changes in a flash. There was a typically developing 18 month old who choked on a sweet, a 4 month old who was shaken, a 5 month old who had meningitis, all left profoundly disabled. Maybe because it could happen to any one of us? Anyway I am rambling now. I agree with OP that some conferences tend to focus more on hf issues.

I am astounded that your lack of empathy for those with lower functioning kids

Hmm, pot and kettle springs to mind.

I don't agree with the stereotype of 'quirky' etc = autism, Ive heard so many times 'but he can talk' when Ive said my son is autistic, lots of people think it always means low functioning.

A few posts on this thread implying the problems/issues with HFA are not real problems, they are different problems that's all.

I'm very glad that my son can talk, I'm not glad that I hear him talk about killing himself. etc etc.

I can relate to lots of what Colditz and Poltergoose say.

I agree with the OP, unchartered (on first post, no need to explain IMO) and jimjams; it does sometimes feel that as a parent of a child on the spectrum you would hope that you have a commonality with all other parents with asd/asc dc and then find that it isn't the case. Like jimjams, I haven't been able to get childcare to attend forums, etc and frankly I've not really wanted to go, I've come across too many hoisty, panty parents with and without asd ds to give a...
I feel for the OP, autism is less prevalent in females to start with and instinctively, parents of hf asd kids really only have those that recognize the difficulties with hf asd to communicate with on an even keel to start with as there aren't obvious asd indicators that the public can relate to. So given a conference they may get over excited and dominate.

I would say that families with lower functioning kids do have it harder in the physical sense, trying to restrain youngsters, keep them safe from harm, the level of restriction and dealing with basic self care measures in, say a 12yo boy. That is surely one sort of struggle which families of higher functioning kids do not have. Higher functioning is maybe more about 'management

My high functioning son is 10 and still requires my help to wipe his bum, he frequently is in a pooey mess.

He smashes things, breaks furniture, attacks his siblings and often needs restraining, he is incredibly strong. He is not road aware. loads of other things but you get my drift.

Higher functioning does not mean you don't have any of the above problems, it just means you don't have a learning difficulty and you have speech.

It isn't easy for any of us, we all struggle, some in the same way, some in different ways.

SN trumps is never helpful tbh.

Saintly, that nas person sounds awful!

Ive had emails about seminars etc that Id have liked to have gone to but haven't been able to because of childcare issues, Ive given up on nas tbh.

Sorry I am not trying to play SN trumps. I am just saying that if parents are dealing with these issues it is harder. Physically. If you are dealing with them too then you count too, same as parents of kids with constipation/overflow issues who might also often be a pooey mess. Just saying physical toll is more prevalent with lower functioning kids. But not exclusively, as your point makes clear.

Maybe the problem is in the labels higher functioning/lower functioning? Maybe the description just counts for diddley squat?

No need to apologise Handywoman, it wasn't directed at you, more of a general comment.

I think maybe a bit of the problem is people assume wrongly what HFA means?

Ive heard people say 'he has mild autism then?' no he doesn't at all, but because he has a normal IQ that is what people assume.

I think it was directed at me wasn't it Amberleaf?

Still astounded by some of the insensitivity on here. I hadn't understood before why some of the mums to lf kids said they felt a bit excluded on MNSN

I do now

I can't even explain how some if these views make me feel. I'd be out for now if this wasn't my only support.

But now I feel like some on MNSN think I shouldn't post about things I need help with for my DC's. Simply because they are higher functioning than other people's DC's, it doesn't mean that they will ever live an NT life.

I think this thread illustrates just how difficult and isolating it is to be a parent of a child with autism, as there is still a lack of common understanding amongst peers. My friend's son is 9 and more severe than mine, no speech etc. When she visited my house recently, I saw her visibly wilt when my son was talking, though in reality it was a list of demands mixed up with lots of echolalia and his interaction isn't great at all, but by comparison ... I made a promise to myself that I wouldn't bang on about any of his developments in front of her. The truth is, there is always someone worse off but that doesn't bring me a scrap of happiness. I really wish they could give a clearer definition of types of autism, so that it would be easier to meet peers in a similar boat. My friend's boy struggles with noise and my little boy is a noisy little beggar, so sometimes meeting up with kids in tow is not great.

"I think this thread illustrates just how difficult and isolating it is to be a parent of a child with autism, as there is still a lack of common understanding amongst peers."

Yes I think this is so true. We are so isolated that we can be easily hurt when our vulnerabilities are 'pricked'. It's like a wound that can just be opened and bleed afresh like the first day. We need to be careful with each other so nobody feels they can't say what they are struggling with.

sickof

No it wasn't directed at you, if it were I would have included it in the post where I was talking to you.

Merry, easy to say I know, but don't let it get to you, you have a hard time of it and if posting here helps, then you carry on posting!