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Interview with Sophie about her daughter Erin diagnosed with AS

 

1. When Erin was growing up, did you see her act oddly compared to other children her age?

 

Definitely. We had concerns originally that it was ADHD because she played up so much. Now we know different and we've had a steep hill to climb in learning how to deal differently with her to make sure her needs are met. She doesn't accept no unless she understands why not. We thought this was just challenging behaviour, but now we know how important it is for her to understand the reason for everything. One of our biggest concerns was her lack of interaction with her peers. The interactions she did have was very aggressive and resulted in other children children being fearful of her or bullying her. When she was very young she was very capable of having an articulate conversation with an adult by the time she was 2 and a half. I knew this was very unusual but originally just put it down to her growing up around adults with limited interaction with peers. As time went on and the terrible twos didn't finish when she was 2, 3 or even 4. I knew either she was badly spoilt or there was something else going on. To the uneducated masses Erin is spoilt because they aren't willing to see below the surface. To us, the people who know and love her for who she is, a beautiful and intelligent little girl, whose views on life and what's important are different than ours. But that doesn't make her wrong.

 

2. Do you ever find Erin un emotive (has no empathy)?

 

 Sometimes. She can be very affectionate a lot of the time but definitely has difficulty understanding other people's feelings when they are hurt. Her Daddy's Dad died a few months ago . We had left Erin and her brother with my Mum one evening because we had been called to the hospital after her Grandad had a heart attack. It all happened in a big rush and I didn't have time to explain to Erin before we left what had happened and why she was going to her Granny's. We didn't see her until the next day and Nick said he wanted to tell Erin himself that her Grandad had died. He was really upset when he told her and she just said "Oh right". Her Daddy was obviously upset by losing his Dad and so wanted Erin to give him a hug or something, but it didn't happen. There was no reaction even though she could see him crying (not something that she would normally see). I asked her to give her Daddy a hug to cheer him up and she did, but there was no understanding about why Nick was crying. I know she's still quite young anyway to understand the finality of death and it's impact on people, but Erin's reaction was different; in that she didn't try to offer any comfort or affection to her Daddy (who incidentally she idolizes and normally would hug at the drop of a hat).

 

3. Do you feel Erin is intelligent? What do you think she'll do best in? 

 

I think every parent thinks their child is really intelligent, however in our case we do have someone to back this up. Erin's reading ability has been assessed as being that of an 11 year old and her ability to spell is that of a 13 year old (she's 7). She reads constantly, that I really should buy a share in Waterstones. She has a real aptitude for anything she takes an interest in. Her current interest is in Rocks and Minerals and she says she wants to be a Geologist. As for what she'll do best in, she'll no doubt excel at making her Mum and Dad proud because we already are. 

 

4. Living life on the spectrum can be hard but also very eye opening to a different outlook on the world and journey of life. How do you feel about living indirectly as a parent of someone on the spectrum?

 

We don't want Erin to have to conform to what society claims as normal and in order to relate to her we try to live in her world. However, we'd like her to be able to understand other people's view points so that she can accommodate their differences alongside her own life. We feel it's such a privilege to be parents of such a special child and look forward to seeing her become a special adult where she can relate to other people and interact with people who are different from her. But in the long run she has the advantage because she will have a much better understanding of other people than they ever will of her. 

 

5. A lot of people on the spectrum can live life independently, but still a lot of them can't. Do you think Erin is going to be one of those children on the spectrum that will grow up to live independently?

 

 I tend to be quite over protective and Nick always is telling me off for it. I have no doubts that Erin will live independently. I have more concern about my own ability to stop being so protective of her! We all want the best for our children, but as a parent of a child with AS, we can't assume that they will learn behaviour merely through observation. Therefore we make a conscious effort with Erin to teach her simple skills as we go along, starting with the basics like getting her to pay for things in shops or asking for ketchup in Macdonalds. Little steps turn into long walls!

 

6. What do you feel has got to be improved in the services field for Autism/Aspergers and related conditions?

 

In Northern Ireland post diagnosis you're on your own. There are no treatment services whatsoever and it's up to the parents to educate themselves and do the best they can for their children. We had great help from help through Erin's school whom have worked wonders and are really keen to understand and do what they can to help. As for improvements, it's a clean sheet to start with, so anything they do for children diagnosed with AS will be an improvement. As the incident of AS increases, the government and health professionals need to realise that parents require support and guidance on how to help their child grow to be a fulfilled and productive individual. The children need to be treated 'normally' and not be made to feel different.

 

7. Do you feel that there needs to be more Aspergers Awareness Campaign like this one A.S.S.G.O holds? Do you feel that anyone will truly listen and change things for us?

 

Strength in numbers! The more people who stand up for what they believe in, the more AS gets publicized, the better the chances of making a difference.

 

8. What do you hope for Erin in the future? What do you think it will be like?

 

Health and happiness, anything else will be a bonus. She's a good kid and although she can be easily upset at times, she's also tenacious and independent. She wants to learn and understand everything around her and that quest will lead her somewhere she'll enjoy being.

 

9. What advice would you give to any parents who are worried that their child has AS or a related condition?

 

It's hard work but it is so worth it. It can definitely be a challenge and when you first find out it seems like all is lost. I know when I first found out I was so upset and thought her whole life would be an endless rage against the machine. But now I know that as long as she knows how the machine works, there is no friction and she can function quite capably alongside it. Don't assume they're different , try to approach every situation as if you're the one who has to conform to AS behaviour. As soon as you start understanding their view point and how they look at life, it stops being so difficult. Children and adults with AS are only different because society tells us they are, but what is it about society that assumes the masses have a handle on being right?

 

10. Does there seen to be any genetic link to AS or related conditions in your family? Has anyone else got anything like AS? Do you believe there is a genetic link to AS? Are you one of the parents who think the MMR injection was partly or fully to blame for how your daughter is?

 

I thought long and hard before deciding to give Erin the MMR injection. It had a lot of bad press around it at the time. My GP spent a lot of time answering my questions and allaying my concerns. Needless to say, I wouldn't have given her it if I had still been concerned. I do not blame the MMR but I have no medical evidence to back up that opinion. It' only merely a mothers instinct. I understand some parents are skeptical about the MMR. I'm not anymore and my son got it after Erin had been diagnosed with AS. In regards to the genetic link, I think this may be more likely since my Dad (Erin's Grandad) has heard more about AS and has gained an improved understanding, he has said he sees a lot of traits in himself. In particularly with his ability to relate to people and communicate with people. He has always been uncomfortable in large gatherings even if they are with people he knows. I think for many years we have viewed people who don't function well socially as eccentrics, but now I know different. Or maybe I'm looking for signs in other people now???