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Old 02-21-2006, 05:49 AM   #1
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NickyB HB User
Family Members response to Autism diagnosis (New Member)

Hi ,I'm new to this site and I am curious how family members responded to the news of their grandchild/nephew etc having autism. I am a single mum to a 3 year old boy with autism and don't really have much family support as there seems to be a general consensus of denial and constant "he'll be fine"'s (including his father!) When I try to explain in detail (which you have to do) about autism I feel that I'm hitting a brick wall.

I love my little boy so much and it concern's me that this response might be harming his progress especially when he is in his father's care as all the hard work he has done with EIP, a private therapist and myself will be constantly set back because certain routines and procedures aren't followed. (redirecting, ignoring "bad" behaviour PECs etc)

I stumbled across this site and have found much of it to be very helpful and I would love to hear some personal stories with regards to this.

Thank you for listening

NickyB

 
Old 02-21-2006, 06:27 AM   #2
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Annee HB User
Re: Family Members response to Autism diagnosis (New Member)

I don't think denial is an uncommon initial reaction from extended families, especially when a small bit of research will tell them that Autism is genetic. The problems occur when these family members try to come up with alternative explanations for our Autistic children's behaviors. The worst is when they resort to blaming the parents. We've spoiled the child or we're too fretful, etc., etc. At that point, you may decide to start avoiding certain family members rather than spend what little energy you have left on them. I had to make that decision and I'm glad I did. Those family members eventually accepted my child and his Autism on their own, it just took longer. There comes a time when you have to choose to focus on your child and let the rest of the world take care of themselves. Really, how much time can you invest in educating everyone around you when your child needs you so very much?

As for his father, I suspect that self-preservation will cause him to come to terms eventually. I had the same experience, when my son's father could not accept my child's Autism. He eventually came around for lack of any other options, but it did make my job more difficult in the interim. Just be sure to take care of yourself, physically. It's surprising how fast stress and lack of sleep can wipe us out.

One last thing, since your not getting a whole lot of moral support from your family, consider making some connections with your local Autism Society or parent support group. You can devote as much time or as little to them, but it's nice to know they're there.

Last edited by Annee; 03-03-2006 at 09:15 PM.

 
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Old 02-21-2006, 07:14 AM   #3
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Kolby HB User
Re: Family Members response to Autism diagnosis (New Member)

You are not alone. Before my son was dx, I told my husband that I think he has autism. My husband said "I think you want him to have autism". Once dx I don't think it sunk in for a while with any family members. They just don't understand what it is. You're best bet is to educate them. Talk about your childs strenghts. You know there are so many special things about children with autism. Till this day my husband will say stupid things like "what's wrong with him?" I just roll my eyes.
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Old 02-22-2006, 01:38 PM   #4
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Re: Family Members response to Autism diagnosis (New Member)

It must be rough for you right now. We had this issue with our family and it can still be hard. My MIL refused to believe it. She refused to read the evals, etc. My SIL read the evals and was on board with whatever we needed. She was so surprised to see what different teachers, specialists, etc had to say about our child. We live 4 hours away from my husbands family, so when we visit its a real treat for the kids. Its only been the past few years that my daughter has really warmed up to them. They don't see the everyday things, and what behaviors they did see, they dismissed as being away from home, being eccentric, needing more discipline, etc.

What really changed my MIL was those autism specials that were on NBC last year. One of the kids on there was exactly like my child. She is high functioning, but has poor speech, has problems with social interactions, etc, etc. That is what opened their eyes. I taped everything about autism that has been on tv in the past year and my husbands family has the tape. I think seeing it from someone else, made the difference. Now they are happy to make adjustments in what our family does together. We avoid crowds, etc, when we go out as a family. Before that would irratate them to no end, now they know it must happen in order to avoid major outbursts.

Hang in there. Get them some literature, tape some shows, etc. Highlight your childs behavior in the literature. Write them a letter telling them the symptoms, your frustration, etc. I let it get out of hand and had a huge blow up fight with my MIL. Hang in there!!!

 
Old 02-23-2006, 12:03 PM   #5
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claste HB User
Re: Family Members response to Autism diagnosis (New Member)

hi there, you're not on your own with not much family support, my family are much the same, it's been 2 years since my daughter was diagnosed, my dad doesn't understand autism at all, although he has adjusted to the way she is, he can't understand how without a brain scan, they can diagnose autism . i can't keep wasting my energy on trying to educate my family. my sisters are wary of my daughter, they don't know how to approach her, how to speak to her, or how to play with her, if she screams they are fearful of her, like shes going to rip their heads off, my girl isn't aggressive, shes very clever, loving and affectionate, shes a miracle and shes taught me to appreciate the small things in life, we fell out with my brother in law and his wife 4 months after the diagnosis, they were getting married in july of that year, and were concerned with how my daughter would behave with her being "autistic", needless to say we had a massive row about it and haven't spoken since. they say you can't choose your family but you can choose your friends, i've made some wonderful friends since, and they love my daughter as if she was theirs, i was told that most people put a price on their love, very few people love unconditionally, this is very true with my family, but i've been blessed with my friends, one last thing, our in laws are fab.

autism makes life real.

 
Old 02-23-2006, 12:20 PM   #6
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Re: Family Members response to Autism diagnosis (New Member)

I know that in my own extended family...there seemed to be a unrealistic expectation of what my son could or couldn't do. So many people would say to me....I know so and so that is autistic and they could do this or that. I try to explain that no two autisic people are the same, but this often falls on deaf ears. I find that one of our biggest obstacles is family pitching in and helping out...that sort of thing. They don't know how to relate to him..so they just don't try. Does that make sense? I know what I mean, but not sure if I'm expressing it right. You know your child better than anyone else. You are his champion and I applaud you and encourage you to stand strong.

MightyMommy3

 
Old 02-23-2006, 07:37 PM   #7
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Re: Family Members response to Autism diagnosis (New Member)

I'm 32 and am mildly autistic. I think it was a shock to my parents when I finally got diagnosed a few years ago but I think it also helped 'explain' a lot of things which in the past had just been baffling. You sound like a very sensitive mum. I think it's important to understand and realise that a lot of your husband's denial of the diagnosis is in a large part fear - of the different, the unexpected, the 'unknown'. I think it's a very natural response with many parents when their children are first diagnosed - probably more so with men. (It's probably generalising but they don't seem to talk as much or as openly about these things as women or to admit when they feel vulnerable - they think it's their place to 'take charge' and take away the problem. With other disorders, the signs and symptoms are more obvious - with autism, they're clear to anyone experienced but more subtle.)

In my experience, fear often comes from lack of information. When my parents had problems when I was an infant, information was very poorly provided and there was very little awareness about autism. I don't feel angry at them (my parents) - deep down, they knew there was a problem but times were different then and I think they just did the best they could under the circumstances. They got a lot of unfair judgement and criticism from others who were probably well meaning but who just didn't understand, and it must have been very hurtful. I feel sympathy for anyone in this situation - good luck.

Last edited by smw73; 02-23-2006 at 07:45 PM.

 
Old 02-25-2006, 08:14 PM   #8
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Beautifulchild HB User
Re: Family Members response to Autism diagnosis (New Member)

Most of us here would understand what you are going through with other people.

My family has been quite supportive about my sons autism. I wish I could say the same for my husbands family. They mostly said all the right things in the beginning but it is obvious that they either do not understand or they are uncomfortable being around him.

My father-in-law believes that he will either grow out of the autism or that they will find a cure and he will be given magic pills to make him better. He will not believe that he will be autistic forever.

As for the other members of the family - they all said the right things offering their help if it was needed. However, since then we very rarely see them. I think that they do not feel comfortable being around our family anymore.

I have found that it is best to avoid negative people for my own benefit. My son is a beautiful child and I feel truly blessed to have him as part of my family. He brings so much joy to my life every day and those people who avoid us are the one's who are missing out on getting to know such a wonderful person.
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Old 02-27-2006, 02:59 AM   #9
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Re: Family Members response to Autism diagnosis (New Member)

Thanks everyone for your responses,it has really helped a lot.

 
Old 03-05-2006, 05:47 AM   #10
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marissamm HB User
Re: Family Members response to Autism diagnosis (New Member)

my son is 17 was dx, at age 3 his father insisted there was nothing wrong same as his parents and family, he lives out of state when he was 6 he went to visit them , his grandparents took my son off his meds without consulting a doctor or myself i got a call to drive the 24 hours to pick him up he was too hard for them to deal with, then when my son got home his father and grandparents ignored my kids for 10 years, when his father called my son insisted on visiting him for christmasa year ago i agreed because i had to have thyroid surgery and couldn't take care of him, his mother called me to ask me whats wrong with him i told her to read his not***** i put together for him to explain all his quirks,and how to deal with him, well the visit didn't go well and they have not called my kids in a year including his own father.

 
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