Feeling alone

I am new to the forum and this is my first time posting and I was almost relieved to read your post as my husband and I are going through the same thing just now.

Our son will be 5 in August and was diagnosed two days ago and my husand and I are at very different stages of acceptance. I noticed very early on in my son's life that there was something different about him but it wasn't until he was 3 and started nursery that my husband had to accept that there was a definite issue with his speech and language. He was immediately referred to a speech therapist and after reading a lot on the internet my husband and I were both convinced that he had ASD. The speech therapist sent him to a speech and language nursery which he still attends four mornings a week as well as his mainstream nursery. Also, as he has real problems with social interaction, the mainstream nursery have an outreach worker, who deals with autistic children, working with him once a week to work with him on this area. In the last year, he has made so much progress he is like a completely different child, so my husband and I had started to doubt our initial instincts that he had ASD, so when he was formally diagnosed on Wednesday, we were quite shocked.

My husbands argument is that he has made so much progress in the last year, whats to say that if they tested him in another years time the result would be the same. My feeling is that the only reason that our son has made any progress over the last year is because he has already had a lot of intervention, most of which is designed for autistic children, and it has obviously worked.

My family are very supportive but they dont understand. They are trying but I feel very alone as I am the only person who has actually accepted the fact that my son has ASD. Everyone else seems to be trying to find every bit of evidence they can to support that he does not. I feel that I am constantly repeating myself and defending my opinion.

I think the fact that I knew a long time ago has helped me come to terms with things a lot quicker than my husband and the family. I am hopeful that my husband will eventually come round in his own time, however, I respect that he too has his own opinion.

After a few arguments, we have agreed that we both want whats best for our son and that we have different opinions. We have set aside a night this week where we are going to gather as much information as we can and then talk about everything properly. We are also going to get a list of questions ready for the consultant.

You are definitely not alone and I am so glad that I am not now either.

Hope we talk soon

Laura x

hi,

 this is my first time posting, my son is 3 and waiting to be diagnosed, i always new that there was something but everything is happening so fast, i feel very luck that all the people helping me have put every thing in monition so quickly, it all started in April and will be diagnosed in november, the only thing is my husband who like yours think that i was pushing it, he get very cross and i have tried to make him read some books but they probably need more time than us.

I think when will all find out that our little boy or girl is autistic, we feel alone no one to talk to who understands, I'm all ways here for you if you need to vent, lol.i find that it helps.

hugs

It is possibly worth considering whether there is any previous pattern of even very mild ASD in the family. A partner may be reacting to his/her own self-doubts about having had similar symptoms or about a close relative showing signs. In the past people tended to "bury" such problems as the consequences of it becoming known that social services were intervening attracted stigma. This "folk memory" if I could call it that might make people more reserved about these things today, even though taking action to get support is now the right approach.

Hi! Bscburgess

i newly joined forum and happened to come across your comment. I have exactly the same situation. My son's dad can't understand what having ASD means to my son, my hus just thinks it is his shyness and "he is shy, so what?". All his aggresive behaviours (due to meltdown) is because of my poor parenting, well that kind of comments really hurt me....as I have been working so hard for him... my hus was also outraged when he found out I was going to claim DLA. My hus told me DLA is disgreceful, using my son't diagnose for money.  My hus believes that my son can eaily survive without any special arrangement, such as selecting school etc and he is indifferent for our son's future. Yes, Bscburgess, I do feel very alone and isolated, too. You are def not alone. 

my husband was the same and it does take time for men to adjust. my son was awful, it got to the point that i became depressed never left the house, and refused to go anywhere with him because i was afraid he'd hurt himself (crossing the roads etc). i loathed the fone ringing because i knew it was the nursery school complaining about something new. its been nearly 3 years since he was diagnosed and its great, no more annoying fone calls, no fear about taking him out cause i learnt how to explain things clearly to him. husband is so much more understanding and helps where he can. so believe me and everyone else when i say it will and does get better, diagnoses is the first step to your sons future and your sanity :-)

Hi, yes I can definitely relate to your situation.  My husband is eating up inside too, he doesnt show a lot of emotions as he believes its a man thing.  But aswell as that I am so low some days that he doesnt want to burden me anymore.  I have noone to talk to really that understands.  So you are definitely not alone. 

Hiya,

I just wanted you to know that you aren't alone. My Husband & I were exactly the same and I completely relate to everything you have said...  welcome to the club.  I've no advice except just give him time.  Your partners reaction is normal and will subside over time.

I hope we get to chat soon. 

Emma. x

Hi BSCburgess. You are definitely not alone. Your partner may need a bit more time; leaving some stuff around for him to read, as someone has suggested could be a good idea. Having your son dx-ed is definitely the right thing because this is the only way he can get the help he is entitled to.

Hi,

you are certainly not alone. i first had my concerns about my son when he was 5, and he has just been diagnosed and is nearly 11! while my family were willing to hear me out, i felt as though my husband wasn't interested. he never came to appointments with me, apart from once, during which he text me saying he was bored! he and his family for a very long time thought he was just shy and didn't mind playing  on his own - it's very difficult to put into words, i found, to explain that it's more than shyness. they accept it now, and try to 'go along' with it, although nanny still insists he cuddles her!!!

please don't feel alone - if you ever need to chat or sound off we are all always here! or better - if you have a funny story to tell us about your son....lets face it- there are many comical moments! it's good to see the brigher side of ASD too...take care

Hi Bscburgess

You are def not alone, even if you just have a look through some of the posts on here you will see other people feeling the same way. 

My son hasn't actually been diagnosed yet, but we are waiting for him to be reviewed but I have had very similar responses to you. My husband was a bit more willing to talk about it as he came to the appointments with me, but not necessarily believing what we have been told. My mother-in-law also told me that if I keep taking him to his interventions and to see doctors that he will think there is something wrong with him. 

As everyone else has said everyone deals with things differently. You are doing what is right for your son and he will now start getting all the support that he needs and you can start to understand a bit better what is happening. If you feel like a chat about anything put it on here. It definitely helps to know that other people are having the same things happen. 

It might be worth asking at your son's school if any other parents there have a similar diagnosis and may like to be put in touch with other parents. I've recently met a mum at my son's school and it is so good to talk. 

Good luck

Vic x

Hi Bscburgess

Sounds like you're going through a very difficult time, and that you and your husband are at different stages of acceptance. Zoe's given you some great advice there - you could also try the NAS parent to parent line. Details are here:

http://www.autism.org.uk/p2p

Either you or your husband might find this useful to talk things through confidentially with another parent who understands what you're going through.

I'm sure many of our users will have experienced what you're going through - you certainly aren't alone here. Hopefully you'll find some support here in the experiences of others.

Best wishes to you and your family.

Sandra

Hello

You are certainly amongst people who understand it all here.

Different people respond very differently when their child receives a diagnosis.  It may be that your partner needs a bit of time to process it before he can come to terms with it/understand it.

I know some parents in a similar situation who have found that writing things down for their partner, and then leaving the info for them wherever they could read it privately and in their own time has helped.  I guess that gives them something to go back to - you could write down a few key facts and then leave some internet links that your partner could explore more in his own time and when he feels he needs the information.

You could also write down that you would really appreciate the opportunity to talk about it all, as its hard for you as well.

The other thing that might help you is being able to talk to other parents locally - you may find there are people there who have had similar experiences who may be able to recommend something.  Plus, as you say, it really does help just to be able to talk to someone else who understands your situation. 

You could search on your local authority's web site for a local support group, or search the NAS' Autism Services Directory

http://www.autism.org.uk/directory.aspx

if you type in 'local support group' in the 'I'm looking for' box and then your LA area in the box underneath, that should bring sone options up.

Hope that helps

Zoe