to not pursue asd diagnosis for 12 yr old?

[cabsarehere]

Hi,

I'm posting here rather than the sen boards for a wider variety of opinions.

My 12 yr old DS is currently on the waiting list for an asd assessment. We have been waiting since oct/nov so I think we still have a good few more months of waiting yet.

I am really torn as to whether pursuing this is in my son's best interest. I am concerned that the assessment process will be stressful and make him feel like there is something wrong with him and that if he did go on to be diagnosed that he wouldn't take it well at all and it could actually make things worse.

He is coping relatively well at the moment. He is prone to outbursts of anger, these have been occuring maybe twice a month since starting high school in sept. Only at home not at school.

At primary he did have angry outbursts at school but only about once every 5-6 months his behaviour at home was mostly ok during this time.

His schools have never mentioned asd as a possibility it has all come from me, I suffer with anxiety and worry that I have just read too much about asd (on munsnet mostly) and have convinced myself there is a bigger problem than what there is.

He is at such a sensitive age and his self esteem is so fragile.

I also wonder what support is actually available, he would be at the much higher functioning end of the spectrum and I'm not sure what could be offered that would be helpful.

I myself fit a lot of the criteria for asd, I think that if I had been told at age 12/13 that I had asd I wouldn't have pushed myself to do things that I have.

This is just going round and round in my head, I am driving myself crazy!

Any opinions/advice would be much appreciated.

I went through adolescence with undiagnosed ASD and would not recommend it.

I haven't read all the thread so I apologise but I have one child with a diagnosis (very early at 2) who is now 18 and my youngest has just been referred.
As a teacher I asked whether I should. He is functioning well at school but hand flaps, makes odd noises, has toilet issues etc and the senco said do it now before the hormones kick in.
I am just going to take one step at a time. From a schools perspective any additional info is useful to build a picture.

Thanks so much for all the replies it has given me lots to think about

I do think my main concern is how he will feel about having a diagnosis but I guess we will cross that bridge when/if we come to it.

I get so scared thinking about the future. When I read about all these asd teens struggling through puberty and self harming it literally terrifies me, I don't think I would be strong enough to cope with it.

Re: the Undateables, it's the name and concept of kids with AS finding it hard to date that I wouldn't want to bring to my DS 's attention in any shape or form. He's already aware that it could be an issue for him. He thinks that in the future he's going to have a great, fascinating job, he has friends and can see himself having a great social life, but he has doubts about relationships. 'Who's going to want to have kids with someone with autism?' He has asked me that a few times. (I have answers, of course!)
That's why regardless of the content I wouldn't show that one.

With DD (8) and various assessments, I have explained that they are to help us all (including her) work out where she needs help and where she doesn't. She has quite enjoyed them, loved having some one to one attention, and the various profs and I have focussed on the positive.

For example, she has sensory integration disorder, and understanding her need for different types of sensory input have meant we can put a structure of activities into her day that make her feel more comfortable and able to concentrate when she needs to. School have to listen, rather than dismiss me as a neurotic mother with a badly behaved child (not last couple of teachers thank goodness, but the Year 1 teacher was a nightmare!). So DD benefits both from the activities, and from a) knowing that she wasn't bad, naughty or inadequate and b) not being treated as if she is bad, naughty or inadequate.

That doesn't mean everywhere we go we announce her diagnosis! But that she and I understand her needs and can work those into our daily life, and where appropriate can insist that her needs are accommodated in more structured environments.

Also, friends with children with complex needs (adopted children with early trauma, who often don't fit one set of criteria neatly but have elements of ASD, ADHD, attachment disorders, sensory difficulties etc etc) have found that an ASD diagnosis has been the most helpful in getting their children's needs met, and their behaviour accepted non-judgementally.

Hi cabsarehere, teenage years and early twenties can be very difficult for a lot of children and young people. A diagnosis should mean there's a better chance of the appropriate help and support for any future trauma. Trauma is not a given though.

Come back here for more chat when it gets nearer.

Days like today remind me why I decided to pursue assessment.

He just lost his temper because his 'friend' was winding him up on the xbox. All comes tumbling out that he feels like he hasn't got any true friends and nobody notices him and nobody speaks to him.

My heart breaks when he says stuff like this, how can I help him?

He didn't go to school today because he said he had a headache, I now wonder whether it was just an excuse for a day off.

it may well have been a genuine headache. Anxiety is very common in children with ASD. DS complains of either his head or his belly hurting in stressful situations.

I know from my own experience how awful anxiety can make you feel.

I don't know how best to help him. I feel useless.

He seems to be clinging on to primary school friendships but I don't think they are really interested. I have at times heard how they speak to him on xbox/skype at times and they don't seem to have much respect for him.

I think you should get the diagnosis whilst he is still young.
I have long known that I am "different" and when Autism/Aspergers hit the headlines about 20 years ago the penny dropped for me.
I won't bother getting a diagnosis at this age because what good would it do? It certainly won't help me in gaining employment, let alone keeping employment which I have ALWAYS struggled with.
I won't get benefits.
There isn't a magic pill or cure that will help me.
However, it's different for young people. With early intervention, the problems suffered as an adult will be lessened.

DD was assessed today, she is 10, and she was given a diagnostic of autism spectrum condition. Is is subtle and she masks really well most of the time. But she is happy and relieved to have a condition that explains and validates her struggles IYSWIM, she is not awkward or difficult, she genuinely finds certain things hard that are easy for her peers. Having that diagnosis will help find a niche that meets her needs and surround herself with supportive people and she will learn to avoid triggers that fuel her anxiety. As a family we think this is a positive step.

I did have one a while ago polter under a different user name so I might go and resurrect it.

Even if he manages to deal with things without support, he may later appreciate knowing rather than not knowing.

The adults I know with diagnoses of mental health issues feel "better" having a diagnosis rather than just thinking that they are weird.

I've bumped my thread on the sen board.

I have honestly never felt more useless in my life

My friend is being investigated for a diagnosis. He's married with a family, but has had a difficult time retaining jobs in recent years. He is conscientious, and gets anxious about it, fuelled by recent experience, and some senior staff misinterpret this as being incompetent. If he is diagnosed, it allows him and others to understand his behaviours better and gives him better protection at work. He's had a variety of issues which may potentially have been mis-diagnosed.

When teaching, even when I get no extra support to a diagnosed student, the "label" means I can take a more personalised approach to meeting their needs which can be missed otherwise.

Don't feel useless cabsarehere, please.
Why don't you go and look at the NAS website and see if you can find some stuff to help in the meantime? They've got a helpline too.
Look after yourself.

Me neither. In fact it made life so much easier.

You're right I am terrified. It's ridiculous and I need to get over it.

I suppose having a diagnosis just makes it real and that his problems aren't going to go away.

I know I'm not dealing with it very well. But you have hit the nail on the head I am literally terrified.