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When no one believes it but you.

(11 Posts)
sunfleurs Tue 23-Jun-09 14:50:15

My ds has a diagnosis of High Functioning autism. I have long accepted it and have made it my lifes work really to deal with it and help ds learn to live with it. However most members of mine and exH's family do not believe that he has it. For example looking at vegetables and fruits and sauces actually frightens him and can lead to a meltdown. Whenever I remove offending items from his view, my dad snorts, laughs, shakes his head in disbelief. When ds has a meltdown he is labelled naughty and my dad has even said "He is bloody well trying to wind me up", ds is 6 and autistic fgs. I have given him and easy to read book on the subject he reads the odd paragraph and just says "thats not my grandson".

My FIL visited a few days ago and told me the he just didn't believe that ds has autism because he and MIL just "can't see it". Ds has a diagnosis of autism, sees an Ed Psych, an Occuptional Therapist and Speech and Language Therapist and is currently in the process of getting a statement. Apparently we are all wrong hmm. I, am making it up, ds also it seems has got school right where he wants them with all the special help he gets. Ds is apparently maniupulating them so he doesn't have to behave like the other kids. Even ds's dad thinks this. When concerns were first raised and I wanted to ask the gp for a referral he went mad and told me I was attention seeking and wanted ds to have autism so I could get loads of attention for myself!

I feel at my wits end really. We have school support which is brilliant and my Mum is pretty good, she is at least willing to read up about it and handles ds really well. I just hate this constant family gossip that I am making this up for my own ends and that I am clearly a bit nuts for wanting to do so. Any tips or ideas for dealing with it would be welcomed. I feel self concious all the time when I am dealing with autism related behaviour in front of family, never feel like this when I am on my own with ds or even in public with strangers, how sad is that?

Frasersmum123 Tue 23-Jun-09 14:53:38

Have you let them see the reports from your Paed/Ed Psyc? My MIL was exactly the same about DS until she saw it all in black and white from a professional.

SuperSoph73 Tue 23-Jun-09 14:56:10

sunfleurs I'm so sorry that your family .. apart from your mum ... are reacting like this. Maybe it's fear, who knows. With some people of the older generation it sometimes seems to be a case of, well if you can't see it then it's not there. This obviously doesn't include your exH. I'm afraid I can't comment on autism but just wanted you to know that you're definately not alone I'm sure and there will be plenty of people round here to give advice soon.

bubblagirl Tue 23-Jun-09 15:03:15

my ds has HFA also and we had alot of this to begin with but as time has gone on they are wanting to know more about it have accepted they dont see or deal with what i do

some people don't want to believe it partly out of love and some ignorance

id really try and leave there comments floating through with no response back to them its ignorance give them info on hfa and leave it at that no amount of talking would get it through i gave them info and from there they took note i don't think they really believe it as such still but they no longer tell me his ok nothing wrong etc and want to know how things are going etc congratulate me for all my efforts regarding SALT etc

one of the first things that wa said when i mention he had ASD was oh that hast come from my side of the family shock

sunfleurs Tue 23-Jun-09 15:04:14

Frasersmum, I always say "ds must be extremely clever at age 6 to have made everyone believe he had autism just to get off doing his homework". They never want to see the reports I have offered and to be fair when I do exh will usually pipe up and agree that yes he has had the diagnosis and there is something...........etc. Did you manage to keep away from that horrible thread in AIBU? I sort of felt I should come steaming in and defend SN kids because of ds but I just couldn't really think of anything to say, worn out with doing it in RL probably smile.

Supersoph, I think it says more about what they think about me than what they think at ds and "autism". Dh and his family are "blamers" it always has to be someones fault so ds's autism is mine I think. They don't want him to have it, so won't see it and the problems he has are all down to me making things up. I wish they could see that it doesn't do ds any favours to deal with it this way.

sunfleurs Tue 23-Jun-09 15:07:43

Bubblagirl, I got that to. "Where has it come from?" "Whose fault is it?". If I HAD to say I would probably pin it on exh's side seeing as he has a grandad who obsessively collects toy buses and has a whole living room full of them on display - Adult Autism anyone?

However it is more likely me, there is a lot of stuff that ds does that really strikes a chord with me. I don't care, I would be proud if it is me and happy that he has someone close who really understands him.

Frasersmum123 Tue 23-Jun-09 15:13:12

I did manage to stumble on the therad and it made me

Apparently DS's behaviour is all my fault and nothing else, so I know what you mean. He doesnt speak because I dont encourage him and he acts up and doesnt socialise because I dont take him out.

TBH I have just stopped speaking about it with people I know dont believe me, its not worth all the effort and gets me really upset.

bubblagirl Tue 23-Jun-09 15:32:40

i take no notice anymore my ds is who he is i adore him his my best buddy and at the end of the day whilst im here fighting his battles then nothing else matters to me

only thing that i find worries me if anything god forbid ever happened and someone else to take care of him id want them to understand and respect his needs so i know he'd get the best from life

time will tell if others will accept but to be honest i dont care anymore i'm making sure i write all his needs down and if anything ever did happen he'll go to my parents who respect and love him for him

HelensMelons Tue 23-Jun-09 17:21:53

Rings true for me at times as well. My mum is supportive but dissassociates herself from the 'behaviours' - a defence mechanism I think. She will talk about such and such having a really hard time with their dc but if I mention that her grandson does it she always looks at me blankly!!

DS2 has a thing about flowers inside the house - he really hates them - they "tickle my nose" and there was a whole a palaver about that - on dd3's birthday. He was seen as playing up and being manipulative because he wanted them moved.

Sometimes I feel the stress of family being judgemental but I think I have to learn to be more confident and just ignore it basically.

cory Tue 23-Jun-09 20:12:47

my family have really struggled with the 'where has it come from' bit; my Mum hates the thought that dd's disability is genetic (and almost certainly from her side of the family) and would far rather be told that it is environmental as it could then be blamed on the foreign country (UK) I have chosen to live in

though she was v good and tactful when ds too was diagnosed

mysonben Wed 24-Jun-09 14:51:48

Dear it is so hard having to deal with relatives who are in denial. Just reading the comments you got when seeking help for your ds such as'you want him to have autism to get sympathy' Gosh that is so low!!! shock
Why do relatives act this way??? it is so frustrating at times.
I sort of get the same from my in-laws. MIL said to me 2 weeks ago 'i do not believe he has autism!' then added quickly nobody on our side has that! What the hell??? DH 's cousin has a little boy who has it, and one of dh' sister has 2 kids who are on the spectrum with adhd, on that MIL says the kids are not asd but simply naughty!

They simply do not live with our children and do not see all the struggles they and we as parents go through. Also i think the fact that autism has changed to autism spectrum and encompass more able , milder behaviours in children , so if we consider that older relatives probably look at autism in a different way ,more likely the severe low fonction end. And add to this ignorance , my sister told me my ds views us as 'objects and that why he has trouble expressing and recognising emotions!' What a lot of bull...! She obviously have'nt got a clue.

When i get comments now i let it slip of my back (easier said than done sometimes) or i simply say 'whatever'

Don't let them get to you . smile

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