Daughter just diagnosed at 16 really need some help!

Hi,

I have just joined the forum today after my daughter (also 16) was diagnosed on Monday this week! You could be telling my daughters story. 

She has been depressed for about 5 years, we sought help but got nowhere, then last year she told me that every day she wishes she was dead - I sought GP help immediately and she was diagnosed with dyslexia (first we heard this suggested as she reads and writes very well, but struggles with recall and explaining things) social anxiety and  this week Aspergers...She experiences social anxiety more than most of the other symptoms and was hurt many, many times at school by teachers as well as friendships. She is lonely although she has NT friends it is clear she doesn't really enjoy what they enjoy.

She needs a social life that is right for her, that might be sitting in her room with a good friend, or doing something that she feels comfortable doing,  she is actually quite adventurous..

Anyway, like you we are at the start of the next chapter. I really want her to meet like minded people her age but don't know where to start..

Thank you very much for your reply and advice, That is a very good point and something I will look into right away! Power of attorney, my daughter will not deal with any personal or financial issues her self so I am very grateful for that advice! Thank you for offer to PM you I am sure I might take you up on that offer lol thanks so much. All the best to your niece 

My son is 17 and also has hf aspergers. He would certainly be stuck in his room full time if he could. Long story short, he finished hs at 14 and by 16 was transfered to a college out of town. To make his schedule more comfortable, we moved him close to campus. He dropped out because of the pressure and stress, but just when we were ready to move him back home, a company offered him an internship. He works 3 days a week. Recently I spoke with his supervisor and he told me my son was very social with the crew and goes to lunch with them. He also teaches classes to new interns that are 4th and 5th year engineering students. He just turned 17.  Anyhoo, how this transfers to your daughter. Talk to publishers, editors, etc and see if she can intern with them. Explain that she is very talented and doesn't need pay right off. Ask them if they could just meet with her and see if they'd entertain it. 

Feel free to bounce ideas with me here or via private message.

My niece is in her mid 20s and although undiagnosed is almost certainly ASD. My sister has been enormously helpful about helping me understand that you start with one day at a time type goals e.g. getting kid out of room and helping with grocery shopping, rather than big picture worries.

This niece is now out living independently has a mix of part time and seasonal jobs and lives on her terms as a crazy cat lady with a very active online life. Just recently she surprised us all by volunteering to give extra help to her great uncle while his wife was in hospital 

One thing to get a bit of advice (might take a lawyer's visit) is to find out how you establish enduring power of attorney early i.e. when they become legal adult. It's to help be their advocate in appointments. I've been lucky our GP respects my judgement and we middle through without legal process in place, but longer term and with specialists this could be a problem.

SD20 has me as her agent in dealing with government departments because of her ADHD and gets me to chaperone any medical care because she struggles with the speed of thinking and the remembering.

Thank you very much angeldust this has been most helpful, I am happy to say the doctor who diagnosed my daughter did say we would receive a follow up appointment within 6weeks so we could discuss any issues we had, as the day of diagnosing can be a hard day to take in! Every word you said I feel it is so truthful and mostly worry about becoming alone as a family, we tend not to go out much as a family because we know how our daughter will react and we have to end up going home because she just has to much anxiety being out, and it really is not fair on our other 3 children missing out on everything! I am going to look for support groups or any kind of ASD group in my area and learn as much as we possibly can. I will not lie it was a relief to be told our daughter had Asperger's just because we know knew we was right and something as been bothering her for all these years bless her, and you know the day after our daughter was told she was the happiest we seen her in years!! I think she to had a weight lifted from her and understood it is not her thought she has all these problems and she is not causing problems deliberately, unfortunately her good mood did not last very long and she has now gone back into her own world as we call it, not wanting to spend time with us or anyone and spend her time alone! That is why I feel so angry at CAMHS she really dose need mental support! I can't thank you enough for taking the time to offer us your support it means so much and we appreciate it greatly, we feel so much better knowing we have the support from everyone here at this site! Thank you 

Thank you very much, I am going to read this tonight why I have some peace and quiet to give it all my attention and learn everything I can. Thank you Robert

Thank you so much for your advice and insight into your family life also, This has really helped me to be honest I think you are so right and that we should try push our daughter a little more to come out with us more as she to will try anything to get out of any social situations, This really helps as we really did not know where to start I am going to look for some support groups now aswell even just for me and her dad to start with and take it from there. I wish you all the luck in the world for your daughter and family, it really can feel a lonely place with an autistic child so it's wonderful to have this community to help us. Thank you 

Thank you very much for your help and advice Robert, I appreciate it greatly

Hi Lacey,

I am really sorry to hear you have had such a terrible time of it all. Practical advice I would offer is:

The first thing to do would be to educate yourself on Autism; looking through all the information on this site would be a great place to start. I would also recommend reading any books by Tony Attwood- get them out of the library if money is tight. One of the best things you can do for your daughter right now is learn everything you can about Asperger’s. The more you understand about Autism, the more you can help her.

Get in touch with your Local Authorities ASD Co-Coordinator, who may be able to help you access other services. I believe there is allegedly a process upon receiving a diagnosis- you are supposed to meet with the diagnosing team for a post-follow up appointment where you can discuss with them what services are now available for your daughter after her diagnosis, for example whether she will need an EHC Plan, or Speech and Language Therapy etc. I have said allegedly because, in my experience, the reality families usually face is that they are given a diagnosis (bombshell) and then sent on their way, entirely alone and unsupported. Sadly, I am increasingly forced to believe that there are no ‘follow up, post-diagnosis’ services, particularly for high functioning teens.

However, in light of the fact there is a critical lack of statutory ‘follow up’ services for high functioning young people on the spectrum, get in touch with any Autism charities in your local area. Different charities offer different services; some may have Parent Support Workers who can support and advise you as a family during this difficult time, and some may offer Teen or Family services, such as Social Groups which you and your daughter may feel able to attend, alone or together. The more you make connections with like-minded others who are living with Autism too, such as meeting other parents and young people in the same situation as yourselves, the less likely you will be to become isolated and alone as a family. Local Autism Charities will also have a good idea of what services are available in your area, and may also help you consider whether to apply for Disability Benefits too.

Best of luck.

My favourite guide book for autistics in an NT world is

http://www.autismusundcomputer.de/marc2.en.html

I would start by reading Tony Attwood's a complete guide to autism.

We too have a recently diagnosed 16 y/o girl. She still attends school but only because this charter school (we are in NZ) doesn't push her when she gets stuck. We also have her bio-mother resistant to any kind of intervention and the family court not considering that a kid with ASD may not be the best person to make her own decisions about which parent she lives with.

SD16 is beginning to recognise that there is a difference in the two households but unless she makes a clear choice to live with us we can only help her every 3rd weekend and for half of school holidays. She is very limited in her socialising.

We are going to a Families with Autism course next month, where I am pretty certain lots of what we do will get reinforced.

For example tonight she came with us to a pub quiz. She had the opportunity to invite a friend and when she was not willing to follow up a messenger text with a phone call she tried to get out of coming but we said that was not acceptable (then tried to say she had a headache so she got paracetamol). We knew the adult guests on our team were safe adults for a neurodiverse kid (two retired teachers and a mental health charity worker) and although she had her drawing pad she wasn't allowed her music or computer.

My partner involved her by appointing her to run for the team and she also was asked a couple of questions we knew she was likely to know the answer to. All our guests and the host all interacted with her over the drawing she was doing (the host works with adults who have ended up in social disadvantage for a range of reasons).

At the end of the evening we expressed our appreciation she was willing to be there. 

Our biggest struggle is she is aware of somatic (physical) sensation but can't identify feelings such as anxiety. That's why she needs intervention and it's the next battle with her bio-mother. So she was a bit distressed when we got home but refused to accept this could be related to her menstrual period when I suggested it. I now track her cycle in relation to visits and can spot the hormones and their impact.

Overall we do push her to interact outside her comfort zone and before her visit is finished this holiday we will get her to do a couple of "transactons" one of which will be asking at our SPCA about summer volunteering. This is important because it helps her learn how to interact with a wide range of people.

I'm lucky though, my family of origin is full of people with neurodiverse brains so I know that if we are around my family we get support and challenge in the right mix. We have very limited contact with my partner's family because they will be too harsh with her

The way I would explain it.  And not just to your daughter, but to autistics in general.  Is that in life we all have dreams and goals.  But we cannot achieve these goals alone. So we need to get along with other people to get  help and support.   And this requires basic social and communication skills.

These skills can be either picked up by observing other people or by being explicitly taught.

Thank you for your reply, she has anxiety disorder and that stops her from socialising in a big way. I think you are also right and she is unsure how to socialise. Is there anything I can do to help her? We have not been offered any help as of yet and I am unsure where to start. Thank you

Well,... You are on the right website. 

From an aspergers point of view....

As for not going to school.  School is a nightmare full of kids behaving in a way that doesn't make sense.

Not socialising.  Don't know how to socialise or why????

She likes her own space, mostly staying in her room, she likes to play online games and has a great interest in English, she enjoys writing a lot she won a prize for a article she wrote about a restaurant she had her review printed in her home schooling magazine.

What are her interests?