My mum thinks I am doing the wrong thing getting DS assessed for ASD

[tacal]

I am so upset today. Can't stop crying. My mum has not been supportive of me having ds assessed for Autism and today she told me she thought I was ruining his life trying to get a label for him when he does not look like he has autism.

I had a big argument with her and told her I couldnt have her in my life anymore if she was going to be like this. But I still want her to see ds.

I feel bad for getting so upset and saying the things I did. How do you deal with parents when they are like this? I feel emotionally exhausted at the moment and have no one to talk to about this as no one seems to understand.

I'm sorry your mum is not being more supportive. That must be hard.

You are absolutely doing the right thing and personally I am of the opinion a diagnosis is a useful thing to have.

I wonder if its a generational thing. My MIL (who loves abroad so we don't often see her) knows that DD is having assessments and that there is something 'wrong' with DD's development, but she has never once asked what is happening or how things are going.

She wouldn't say it but I know she thinks we are making problems where there are none and that 'all children are different'.

I know we are doing the right thing by our DD as are you with your DS. But it is lonely especially without family support :(

My mum is the same. Although we are not at the disgnosis stage, only just convinced the doctors that he is 'different'. Feels like I have to convinve my mum, his dad, my friends etc. I just don't talk about it to anyone right now.

I found this thread really helpful. Apparently it is a very common reaction.

thank you for your kind words of support Prince, zzzzz and WithConfidence. It has made me feel a bit better about this situation and that I am not as stupid as my family are making out. I will try to keep going and ignore the negative comments from people.The other thread really helped me see I am not alone in having to deal with the negative reations from people.

Thank you!

My advice may not be everyones cup of tea, but I didnt bother telling any of my family remembers of my dds assessments, just told them she has a lang disorder and shes getting s&l support. They accept her for who she is, play n laugh with her..and thats the best support i can get from them, the rest I deal with it.
All my support is from friends who are going through the same thing and mumsnet special needs.

I honestly cant be bothered to deal with anyone elses emotions about my dd so this works best for me.

I hope all the best to u and your ds

My mother struggles to understand about autism but it is important to have support for something VERY brave that you have done. Whatever you do, do not feel guilt for 'labelling' as it were. The label you are trying to provide is one which reads 'Handle with Care' and is important to attain, so as to have him provided with the best help for his condition.

I have heard people talk about 'labelling' and it makes me furious. We are all labelled in many ways: Feminine; Tom-Boy; Fat; Thin; Scruffy; Smart and these are just flippant ones, not as important as one which helps to define how he is treated and the help he will be given.

Please do not be upset at your mother's misunderstanding and ensure you are surrounded by people who are either in the same situation or at least give you the credit you deserve for making this huge step. Well done you for putting your child first and I wish you all the best with discovering that label or not, your child will be unique and special in their own way. x

Sorry - to add. My mother, who is in her 70's struggles to understand about autism as it is very much an invisible condition and often goes unnoticed. She has turned it around and read everything I have given her and is now very supportive as she is more informed as to the difficulties that the children, and the mothers face. It is more likely that your mother's reluctance is out of fear for you and your child, as 'disability' comes with a certain amount of fear of the unknown. Offer her the chance to read more about it and it may allay her fears and make her more supportive. Knowledge is power after all. Good luck.x

Sammy - I wish i had done the same as you and not told my family. It has made things so difficult for me. I think I will stop talking about it to them, there is no point.

Sophj100 - saying I have done something very brave made me cry. I do feel brave and it is lovely to hear someone say that I am. I love the "Handle with Care" label and will think of it in this way if he receives a diagnosis of Autism/ASD.

I will be told ds's diagnosis on Monday so that should help me move on from my current situation and hopefully make me stonger when dealing with negativity.

Thank you so much to everyone for the advice and support. xx

Sophj100 - thank you very much for sharing your experience with your mother. My mum is also in her 70's. Can you recommend a book I could buy for her?

Funnily enough, it was not a book by professionals but the 'The Curious Incident of the dog in the night time' which she read first. It was recommended to me by my son's OT as being an interesting perspective of someone who thinks differently to the 'norm', but in the form of a detective story, so a gentle entry to the world our children live in.

However, there are more books written from a professional point of view. She then read 'Autism Life Skills' by Chantal Sicile-Kira, which gives varying accounts of people's personal experiences together with professional ones.

I confess, however, I have little energy to stay awake long enough to have read much and rely very much on snippets of information online and newspaper articles / radio discussions. Bite-size and easier to digest! My mother did the same. I am currently reading 'Gut and Psychology Syndrome', which is fascinating but hard work - best keep that one for you, if you are interested. It focuses more on diet and the link between physical & mental health. Not for everybody I'm sure.

Keep posting as you can be sure we are all out here, ready to help - you may find you are even offering help to others, something I thought I'd never be able to do! We are all Mumsperts (Mum-experts!)x

PS: If you do stop talking to your mum, be sure to talk to others - it really does help. Maybe you can just give her the positives as she may feel unable to handle the negatives, being that she cannot change them, which is what us mothers need to do for our children x

Ignore your Mum. I haven't even bothered telling mine.

Thanks you once again for all the really helpful advice sophj. I have ordered a copy of the 'The Curious Incident of the dog in the night time' as it sounds great and I would like to read it. I can pass it onto my mum if I think she is open to the idea of reading it. Autism life skills sounds good too. Recently I have started thinking about diet and autism but I am worried about looking into this as my ds has a really restricted diet due to him refusing all but a few foods. I think I will have to start focusing on his eating once he has settled into school.

I am the same as you and I have not had the energy for much reading. I have dipped in and out of a few books but have mainly used the internet for information. I also plan to go to a support group to meet other parents.

Also, I think you are right about only giving my mum the positives. xx

Thanks WetAugust. I really wish I had not told my mum about the assessments. Maybe I wont tell her if he gets a diagnosis of Autism. I have always been a really open person telling anyone who would listen all about my life. Looks like I may have to change. x

I struggled myself for a while with whether to pursue a diagnosis for ds (just had diagnosis of HFA). Any friends, family members (including my mum) would try to convince me that I was being ridiculous, that he was "normal" etc. And, at first, I wanted to believe them.

Maybe your mum doesn't want to face the problem, and feels (hopes) it will all go away if you don't make a fuss about it? I think I felt a bit like that myself until I read all the great advice on this board. I love the "Handle with Care" label. What a great way to look at it.

I am also feeling pretty alone at the moment and can't discuss the recent diagnosis with my mum. We have always had a difficult relationship but things deteriorated a few months ago - just as we were having a very difficult time with ds refusing school etc.

I don't know whether this applies in your case but I think a few of my family members (eg my mum's own brother and father) had autistic traits (undiagnosed). Perhaps even my mum herself... So I think she finds the whole thing a bit too hard to face up to.

Hi brokenstones, are you going to a support group where you can meet other parents? I am thinking of doing this as I think it may help me.

I am so sorry that you are having a difficult time with your mum. It is the last thing you need when you are having to come to terms with the HFA diagnosis. I hope you can work things out with your mum because it sounds like you are sad about it.

It could be the case that members of my family have traits. I have been wondering about myself recently. I had not thought that my mum could be finding it hard to face up to for that reason. But it could be the case. She does keep saying 'we are all on the spectrum somewhere'.

I hope your ds goes back to school ok after the summer holidays. We are in Scotland and ds started primary school on Wednesday. On Friday he said he did not want to go but he did go. I think it will get harder for him. He did go through months of refusing to go into nursery so I am sure it will happen with school.

Best wishes to you and your ds xx

I used to see Autism as a negative condition and on a daily basis it can be, with all the difficulties and struggles for what seem on the surface to be simple tasks. However, with further investigation and bearing in mind the long list of very accomplished famous people who were on the spectrum - Albert Einstein being one of the most frequently mentioned but also (allegedly), Amadeus Mozart, Sir Isaac Newton, Charles Darwin, Thomas Jefferson, Michelangelo, Hans Christian Anderson, Andy Warholl & Emily Diickinson and Bill Gates. just a few people of notoriety whose 'gift' was autism.

I now lean more towards the belief that the ASD child has such a focussed vision, more so than us so called 'normal' A-typical people and it's that focus that causes such battles as children but will prove to be an asset as they adapt to the world around them, in time.

Maybe that's just me simplifying what would otherwise be too depressing to contemplate but looking at the list again, prefer to maintain the hope that the reward will come later.

Sorry if this doesn't actually relate to the conversation at-hand but with both children now asleep in bed & after a glass of wine, I think I actually become more focussed on this subject and the world I now occupy becomes more simplified - maybe they are the way they are as I too have some leaning towards the spectrum myself. There has to be some good out of what appears to be bad.

Rambling over and goodnight.

PS I have avoided meeting other parents to-date and seek great solace in this medium but may too start to surround myself with like-minded / like lifestyled people - it's a comfort to share. x

soph I also haven't wanted to go to groups etc yet; I think I get all the information I need on here at the moment. DH and I did attend two ASD information seminars shortly after DD's dx. Normally we are both quite sociable, and like meeting new people, but at this we didn't talk to anyone else. I can't really explain why, everyone else seemed very nice - it just all felt too surreal.
tacal good luck for monday. My parents love my DD to bits and look after her when I work - they were completely sure that she was fine. I am very close to them, so it was very hard for me not to go along with their line of thinking. I didn't want anything to be wrong either, but as I was the one taking her to the appointments, it was clear that the profs had cocncerns. Ultimately, I had to do what was right for DD. I hated the whole dx process; I didn't want it to be happening, but the issues were there. I have the best DH, family and friends but ultimately I was on my own with this. It was a lonely time. They have all accepted it now though, to an extent, and life is good.
All the best to you and your DS

Hi marchduck, thank you for the good luck, I feel like I need it. It is good to know that your parents have accepted the dx now. Hopefully my family will eventually understand why I am going through the dx process. It does feel very lonely.

Sophj - I like your 'rambling' it is a positive way to think about Autism. I met some parents of children with a dx when my ds attended 'summer school' which was run by ed psychology and slt. It was such a relief for me to meet parents in real life I could really talk to about ds. Some of those parents recommended a support group to me so I think I will give it a try.