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Children on the spectrum

Pretzel June 28, 2013 18:47
We are prospective adopters with personal experience of learning disabilities, including autism. We are thinking of specifically adopting a child with autism and would like to hear from people who have, at all stages and ages. We would especially like to hear from people who set out to adopt a child with autism. Our question is very simple. We just want to know what your experience has been like. And to hear you talk about your child!What helped you decide on his/her profile? What is he/she like then and now? What is your day like?
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Serrakunda June 28, 2013 22:46
Hi I am single mum to Simba age very nearly 9 who has moderate learning difficulties and autism. He has been home 14 months and we got our AO a month ago.I didnt set out to adopt an autistic child, in fact if you had asked me when I started out what type of child I would want to avoid I would have said an 8 year old autistic boyI admit I was very drawn to his photo but very concerned about the autism, I just didnt know enough about it but I had a picure in my head of a 'typical' austistic child. The first CPR I received was dreadful, severe behavioural issues etc. The second a year later, showed a very different child, this together with info from FC, SWs etc etc convinced me that he was capable of progression and a good chance of an independent life.Simba is very high functioning, does not require medication, he attends special school but for his learning difficultes and delay caused by his poor start in life, rather than his autistic behaviours. He is very sociable, does lots of mainstream stuff like cubs where he is doing very well. But he does gravitate towards younder children and always ends up on the edges. I would say we have a very ordinary life, work, school, swimming lessons, cubs etc. He does need a lot of stimulation so we are quite 'busy', musuems, days out, theatre etc so I have to make sure I throw in enough chillax weekends so he doesnt overdo it. He likes his routines, needs a lot of structure, he maps out the month ahead on his calendar so he knows where he is. We do very little on the spur of the moment. He eats the same food on the same day of the week. We can go away with lots of preparation, We look at maps, books etc, I go over train times etc repeatedly, when we are going, when we are coming back, what we'll do when we get there on what days. We managed a week in Gambia at Easter and it went very well. We are very very slowing inching our forward in discussing why he is 'special' but he doesnt have any real understanding yet of his autism or LD. I think we have established a good life. The thing I struggle most with is his obsessive behaviours. Some of his obsessions are short lived, some harmless, some potentially dangerous, some are long lived. He makes a lot of 'noise', squeaks, squeals, repetitive chanting of words and sounds, which can go on for hours on end and drives me totally bananasApart from that he's a real darling, I wouldnt be without him. He is what he is and that's a smashing, lovable and loving little boy, with added quirks
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Flosskirk June 29, 2013 17:42
Autism and the effects of early neglect are very similar - they affect the same part of the brain. A lot of adopters adopt children who turn out to be diagnosed on the autistic spectrum while other people keep saying it won't be 'true' autism but early neglect.If you want to adopt an autistic child you would be looking at an older child, as they don't normally diagnose it in very young children.The thing is, the spectrum is huge and as I read recently somewhere: "Once you've met one autistic child, you've met one autistic child" - they are all different and it's hard to generalise.I am intrigued by the concept of deliberately adopting a child with autism. I have adopted one child who turned out to have an asd diagnosis and her sister will probably be diagnosed next week. We had no idea when we adopted them. I am not saying my life is tough, but it is very different to what I personally expected. Both children are at special needs schools and will need a lot of help and support when they are older. I doubt they will be able to live independently.They think mainly of themselves and have dreadful social skills which have caused us more problems than anything else, as it makes life with other children very difficult.I would say that it's easier with boys as boys are more inclusive - autistic girls tend to be left out a lot, especially as they grow older.Hope that gives you some ideas.
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pluto June 29, 2013 18:50
Boy are as 'bad' also left out. My oldest has severe autism, and learning disabilities. The obsessions, compulsions, 1000 times the same talk I would say drives even the most relaxed person slightly insane.Maybe it is different or easier with children of normal intelligence. My child will need life long care and will never live fully independently. Autistic people can not help it but they are super selfish, that is not easy to live with. They see the world in their own unique way what can be amusing at times. Ones they are trained to do something they are pretty reliable and will do it always that way.Autistic children have often no real friends, they are unlikely to be invited to parties etc/playdates on a regular basis.
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Donatella June 29, 2013 20:36
One daughter on the spectrum, one son likely to be dx shortly, to go with his ADHD and dyslexia.And both completely different. She has more typical autism - speech and language, poor understanding, lacking the ability to understand social hierarchies. No specific learning difficulty and coping in mainstream. Has friends and gets party invites.Him - very bright, high iq, struggles with receptive language which he's been very able to hide because he's so smart. Can't do mainstream, or noise, or labels, or friendships. Really you cannot compare because they both present so differently.Would i have chosen this life of alternative parenting and constant round of assessments and appointments? Absolutely not. But they're great kids, quirky, funny, maddening. And they're mine.But no, I wouldn't have chosen it tbh.
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Pretzel June 30, 2013 21:34
Thank you for taking the time to respond in such detail, Serrakunda, Flosskirk, pluto and Donatella.DH and I have met a range of young men and women with autism and they clearly demonstrate why it is a spectrum: from limited communication skills and/or severe learning disabilities to chatty and/or high IQ. Outside of the measurable differences in disability, there are also differences in personality. (As in the rest of society!) I presume that social workers work hard to match child/parent personalities, taking into account how much disability the parents could personally manage.I wish I could explain why adopting a child on the spectrum is a good choice for us, but it wouldn't be appropriate to discuss this on a public forum. Rest assured, however, that it will be discussed at length with our social worker and the child's social worker. =) In our case, our 'expectation' is to be matched to a child with autism, and we want to be as prepared as possible. Having experience of people with autism and being confident, patient and loving full-time parents of a person with autism are two very different things.It has been very helpful to hear from all of you. I appreciate you sharing your perspectives and experiences!
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Flosskirk July 1, 2013 15:22
No, they won't match that carefully, in my experience.And the trouble is the early neglect or trauma on top. My nephews are autistic but they don't have the early stuff on top. They are relatively predictable. The thing with my children is that they are not as predictable - this causes a lot of problems.I don't know if you have read much about early neglect yet - it is the big additional issue in adoption which goes hand in hand with things like autism.
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Pretzel July 2, 2013 18:41
Thanks Flosskirk for your additional comments! Matching must be a difficult art for people to master. To answer your question, yes, we are even more familiar with the impact of neglect and abuse than autism. About half of the people I have met on the spectrum have been in care. They range in ages from 0 to adult, but mostly pre-teens. I love that age!Thanks also to those who have PMed me. I will respond to these in PM! I continue to welcome all people to share their experiences parenting an adopted child with autism. I appreciate all responses.
Edited 17/02/2021

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