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ASD.

(20 Posts)
JoPerignon Fri 04-Dec-15 16:42:36

My 6 year old nearly 7 has been diagnosed with ASD. It has taken me a while to find a parenting site that has it's own SN section, I'm feeling very relieved to have found this one. Since I got his diagnosis just over two weeks ago I have been reading up about it, but I am not finding the answers to the questions that I need answering which are :-

- Do I tell him he has ASD? If so how?
- Will he need to take any kind of medication?
- Do I tell people or do I keep it to myself?
- Should I withdraw him from his current school which is an independent school, to somewhere that will cater more for his needs?
- Will this diagnosis have an effect on his life as he gets older?

It would also be nice to speak with other parents of ASD children, so I don't feel as alone as I do now.

Thanks in advance.

Flanks Fri 04-Dec-15 17:31:48

- Judgement call, you can find arguments on both sides. It depends on other decisions you make about schooling etc. As with most things, the right knowledge at the right time is probably key to him developing self-awareness as he matures.

- It varies depending on his specific needs. As you will no doubt be aware, it is a spectrum condition, so the needs vary hugely. It is not uncommon for medication to help with anxiety to be offered, however there are many people with ASD who do not need this or through CBT manage to develop strategies. Again, judgement call, and try to look for a source of sound professional advice that you trust to guide you at different stages.

- Use the 'I'm pregnant' test. When my wife was pregnant we limited who was told in the early weeks, so that we had time to adjust but also so that people closest to us would understand some odd behaviour/needs without going nuts. Apply the same theory here, and you will probably find two or three people who you really want to know about this, so that you have an avenue for support and talking it over.

I would advise against keeping it entirely to yourself, as that causes stress to you which in turn impacts your son. Others may disagree.

- Again, judgement call! Speak with the school SENCO and see if they can support his needs. After that meeting you will be in a greater position of knowledge to consider alternatives.

- That depends on support in early years. In this case he is being recognised early on, before many key developmental milestones may be affected.

Short answer, yes, in that his life will be different than if he did not have ASD. However, bear in mind that your life would be different if you were shorter/taller/heavier/had no toe-nails, etc. If you can see it as a 'difference' instead of a 'difficulty' then I think it is a valuable shift in perception that allows you to still see him as your little boy that is growing up in his own way.

I am not a parent of a child with ASD, however I have considerable professional experience with young people around age 15-20 with ASD. From my perspective, him gaining the recognition of need early in life is already an outstanding achievement by you as a parent, you are ensuring that he has the opportunities that any young person deserves in life.

JoPerignon Fri 04-Dec-15 18:11:24

Thanks for the quick reply Flanks, I wasn't expecting it to be quick you've basically answered everything I needed answers to, I can't thank you enough.

- I do think he would benefit from medication for his anxiety, on a scale of 1-10 his anxiety level has never been below 7. I am aware that doctors don't like prescribing younger children with medication.

- Reason I asked if I should tell people that he has ASD is because people already treat him a lot differently which I don't like, it feels as if they believe that he can't do things the same as other children his age, which he can so I will only tell people that are close to us.

- School are very supportive and he is doing well academically, but I know he'd benefit more from a school that can offer one on one support.

- I am 99% sure that he isn't aware that he is different from other children, and I would prefer it stay like that, for the time being anyway although he doesn't interact with any of the other children at school or when we go out/or visit my friends who have children.

Thank you once again smile

PolterGoose Fri 04-Dec-15 18:33:33

Message withdrawn at poster's request.

PolterGoose Fri 04-Dec-15 18:34:57

Message withdrawn at poster's request.

JoPerignon Fri 04-Dec-15 18:57:34

Hello Poltergoose and thanks for the warm welcome smile

- I will tell him at some point tomorrow he does have some understanding of things but he finds it hard to ask questions meaning he has to think about it in his head first then will attempt to ask but order of the words tend to get jumbled up for e.g can I have a drink please? usually ends up as can please I drink, I don't know whether this is part of the ASD??

- He is more or less always anxiety and worrying about something. He doesn't have any problems getting to sleep, although he does get very tired whilst at school and has an hour - 1 hour and a half nap after school.

- Hopefully when he gets older he won't have a problem with being Autistic, and believe it or not I've already watched that video on YouTube did bring tears to my eyes.

Thank you for answering my questions smile

ruthsmaoui77 Fri 04-Dec-15 20:58:51

Hello, I have 2 sons with ASD one aged 7 and one aged 9. They are both very different with very different needs.

Do I tell him he has ASD? If so how?

I told my older son he has ASD because he was older when diagnosed (almost 9) and he knew he was different to other children. He really struggles to make friends and keep them and his self-esteem is very low because of this. Telling him actually helped him a lot - he was relieved. I haven't told my younger son who is now 7.5 because he happily lives in a world of his own. He has no interest in making friends at all and no idea he is different. He is happy and confident. He has less understanding than his older brother.

- Will he need to take any kind of medication?
Both my boys take melatonin to fall of to sleep and this makes a world of difference. Without it they can lie awake for hours, unable to switch off.

- Do I tell people or do I keep it to myself?
At first I didn't tell anyone. It took time for me to come to terms with the diagnosis. After a while I told my family and a few friends. Now I can confidently say that boys have autism without feeling uncomfortable (It's been about a year and a half since first diagnosis).

- Should I withdraw him from his current school which is an independent school, to somewhere that will cater more for his needs?
Both my boys are in a mainstream primary school. I am considering a special school for my younger son but haven't made any decisions yet. My older son doesn't yet have an EHCP - the school SENCO feels he may be too high functioning, but I have started the process. I may consider a mainstream (secondary) school with an autism unit for him - he is currently in year 5.

- Will this diagnosis have an effect on his life as he gets older?

I have no idea, but suspect it will. I hope they get the support they need to live as independently as possible. I don't have any expert advice, just personal experience. I hope it helps

Best wishes xx

OgreIt Sat 05-Dec-15 04:13:08

As others have said, each family will have a slightly different response to each of your questions. Our ds is five and was diagnosed with ASD earlier this year. We haven't told him yet as we wanted to get our heads around what ASD really is and how it affects him specifically (for example, he has an amazing memory and is great at re-enacting movies but cannot play with peers; he is good at using quotes from movies in his speech but finds other children's attempts at friendship confusing and stressful; he has various rituals to help him through the day but can get upset if these get interrupted etc). We've spoken with various therapists (his occupational therapist, early intervention service key worker, psychologist who we saw briefly for anxiety) about telling him and have decided that when we tell him it will begin as a conversation about strengths and things we're each good at, then move on to things we each find more difficult (probably after the initial strengths conversation) before using the words ASD or Aspergers. If he was older we'd have told him sooner so I can understand why you'd want to do that. We've also been recommended the book All Cats Have Aspergers as a way of starting the conversation but haven't yet looked at it to see if it's appropriate for our ds.

We have told his preschool and the school he'll be attending next year and for us this has been really positive as they've provided additional support and transition sessions as well as adjustments to how they work with him to enable him to participate more fully. We told family straight away (they didn't get it at first and were in denial but we've shared resources like the Autism UK website pages on Autism and Aspergers and that's really helped then understand) then a few close friends, and have now told a couple of preschool parents too (mainly so they could understand why he found certain birthday party activities stressful).

And so far as whether the diagnosis will impact your son's life, well, being autistic will no doubt have its challenges but having the diagnosis will help him understand himself better and may also help you find the right help for him as he grow up.

This forum is great but it's worth looking at ASD-specific Facebook groups as I've found these to be an amazing resource so far. I'm in Australia so can't suggest any UK specific groups, but have a look at the Autism Discussion Page for a start.

Finally, the time around diagnosis is quite intense emotionally. Take care of yourself. It's a big adjustment to come to terms with an ASD diagnosis even when you're expecting it and know it is for the best for your child in the long run.

JoPerignon Sat 05-Dec-15 08:29:49

Thanks for the wishes Ruth smile and thank you also Orge, I plan to tell my son and also my older son about the diagnosis today, I will post later.

JoPerignon Sat 05-Dec-15 14:22:18

Just to let you know I have told my son and my 8 year old about the diagnosis I don't really think that my 6 year old took it in, however my 8 year old was very concerned and got upset sad I told him that his brother will be fine with the love and support from us.

Ogre unfortunately I don't have a Facebook account so I'll make sure that I will be a regular visitor on this site.

PolterGoose Sat 05-Dec-15 14:24:46

Message withdrawn at poster's request.

JoPerignon Sat 05-Dec-15 14:49:14

I will show him the YouTube video I think he will benefit from watching it, I don't know what I'd do without him he is very helpful and good at comforting his little brother, who he actually listens to him more than he listens to me.

PolterGoose Sat 05-Dec-15 15:13:28

Message withdrawn at poster's request.

JoPerignon Sat 05-Dec-15 16:35:10

Thank you, he is bless him smile

I have just looked at autism.org.uk/dla I can't see my son meeting the criteria, unless you can get DLA for anxiety? Because that's what the main problem is, he is constantly anxious and it is not getting any better.

It would be very helpful if I could meet other parents face to face because I do feel very alone, well not as alone now I've found this site.

Thanks you've been so helpful flowers

PolterGoose Sat 05-Dec-15 16:40:44

Message withdrawn at poster's request.

JoPerignon Sat 05-Dec-15 17:35:58

- Due to his anxiety we do have to spend time preparing him if we are going to go out which does take a few days, and we can never be out for more than 3 hours, he doesn't need any supervision whilst out he never lets go of my hand.

- Toileting is fine although he won't use public bathrooms and as for self care as soon as he wakes up in the morning he goes to the bathroom washes his face and brushes his teeth, but I still do bath him he does ask in his own way if he can do it himself I think this is because his brother does, he is 7 this week coming so I will then give him the independence to do it himself.

I can now see what you mean, he does need more care than my 8 year old, I couldn't see it but I can now.

Thank you again flowers

PolterGoose Sat 05-Dec-15 17:43:22

Message withdrawn at poster's request.

JoPerignon Sat 05-Dec-15 18:08:03

I am going to apply for it, if we're not successful it won't be a loss.

JoPerignon Sun 06-Dec-15 09:23:50

I have just played Rosie's video to my 8 year old and he got very upset sad at least he has some understanding of his brothers condition.

PolterGoose Sun 06-Dec-15 10:43:53

Message withdrawn at poster's request.

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