Looking to make contact with other ASD carers

Hello Thrifty,

You'll find quite a few parents on here, supporting children and young people with an ASD.

I must admit, the later the diagnosis, the more devastating it can be.
I don't know what it is, but to have a diagnosis that can just be dumped on you, and then you're sent away to get on with things.

My son was diagnosed at 14, and is now 19. He coped to some extent at mainstream school, but broke down after his mock gcse exams. After lots of ups and downs, he is now on a construction course at college.
He has found it hardest to cope with his diagnosis, and completely refuses to accept it.

My daughter was diagnosed at 8, first out of the 2, and is now 13.
She took on bard the diagnosis, and tried to find out as much as she could. She understands how she feels different, and has adapted herself so she can fit in to a mainstream education. She know that between 8am and 5pm she needs to control her autistic characteristics, to blend in with her peer group. She know that she doesn't have to understand their social rules and etiquettes, but just act as if she does.
I often think it's the more able, that struggle to cope and adapt, that loose out, as the education system leaves them to get on with things.

You are the best advocate for your son, and the more you understand where he is coming from, the better you can represent him.
Do you have a connexions service?
I found them to be fantastic in helping me to sort out placements for my son.
When something didn't work, we tried taster sessions to find out other options.
Otherwise, look at college, and see what courses are available.
IF your son will accept support, it can be done in a subtle manner, so he can carry on as if he is 'normal'.

You can put in a claim for DLA. It's not an easy application, and you need to be vey open and honest about how your son is affected, and his care needs.
It can be really hard as a parent putting all this information on a form, as it can appear that our children can be horrible, and how do we cope with them, but it's an important process to go thru. It can be a long process but persevere with it, and if awarded, it can lead to other benefits.

If you want to pm me, feel free to do so.
More than likely, I've been there, done that. Lots of experience with different services, and will help if I can.

Regards
Munchie

Link for Connexions.

I am also just wanting to wish you luck, i can see myself posting a similar thread in a few years. (look at my sig....) I feel sometimes i am the only one who truly understands my daughter.
my daughter is only 9 at the moment, quite high functioning in some ways, very immature in others.
I wish both you and your son all the best.
xx

Hi

My brother was diagnosed with austism at age 24 (he's 28 now) so take heart - your sons' diagnosis was late but could have been later! My brothers also dyslexic, although that was diagnosed a little earlier (age 12!)

For study options: he did distance learning through the OU to get a certificate to get him entry into uni as he got 5 low grade GCSEs and then quit education. He then went to uni and got a 2:1 degree - he got a social and academic mentors and lived in catered halls to help him cope better. He is now applying for work and is being supported my Mencap who seems to be really great.

One of the things that I've realised over the years is that his ability to cope is really impacted by the sensativity of those around him and the routinisation of tasks. Perhaps your son could consider volunteering in a charity shop while he decides what he wants to do next? The people who volunteer in charity shops are more likely to make allowances for difference and there are pleanty of routinised tasks to do 'out the back' that might help to build up his confidence.

I hope this helps

Jenni

Hello Zziggi,

I would be very cautious about going down the private assessment route.
I have 2 children, both diagnosed with High Functioning Autism - Asperger Syndrome, and the diagnosis for both was completely different.

The assessments were carried out by a paediatrician, but then with either Educational Psychology, Clinical Psychology or Speech and Language involved.
As an adult these options would be different.

The issue you may find with the private diagnosis route, is that you are paying for a 'service'.

I have come across several parents who have gone down this route for an assessment of Dyslexia, and schools have refused to accept the results, due to the paying issue.
It seems to be, where there is payment involved, are you given a diagnosis so that you have 'something' for your money. As you are paying for something, there could be a possibility that your given a 'mild' diagnosis rather than be told you are fine, and do not have a particular condition.

If there is ASD in the family, it would be far better to go the GP route, just for the initial referral, then it would be down to which ever service in your area would deal with an adult diagnosis.

Regards

Munchie