3.5 yrs newly diagnosed with Aspergers/HFA

[jackny]

Hi
My DS has just been diagnosed with Aspergers/HFA and not sure how I feel or what to do to help him. I have suspected for about a year that he was on the spectrum - delayed speech, not responding to his name or following instructions. His speech is much improved - 3,4 and 5 word sentences but it isn't two way! His behaviour seems to have deteriorated as his speech has improved. It is a real battle of wills- he won't do as he is told and has taken to throwing things around as a form of entertainment. DS's sleep pattern is irregular and he eats only a limited number of foods. He is an energetic child but refuses to walk when we are out - he likes me to carry him.

I am not sure what to tackle first - any tips/advise

Go with the flow but normal discipline on boundaries.

I looked after a boy with aspergers for 6 yrs when I was childminding, and my own DS2 is on the lower end of the spectrum.

Keep him safe, they tend to do things that can endanger themselves (and sometimes others). read up on info, speak to his doc and be ready for all the up's and down's.

Speach & language therapy should have been offered. Help him with eye contact, but don't force it.

Let him be in the buggy or be carried. My DS was in the buggy till he was 5yrs. There small appetite, lack of sleep and high energy bursts means they can tire easily.

Lots of love and affection.

Try not to get too angry over certain issues that make him unhappy, just try and make the situation better.

Will happily help you as much as can.

Good luck

We are stuck with the buggy for some time too, I would not venture out without it. Also have the diet issue, speech issue, the sleep issue - really wakeful in middle of night. You should now get some support / advice eg from an autism outreach team at your LEA? But we have gone the ABA route. We are also investigating a special school nursery where very experienced in ASD. We don't think DS will be in special school forever as likely to be excluded on IQ grounds at reception age but think he would benefit for 1-2 years of nursery provision which would work on his issues rather than him having to do the mainstream curriculum which isn't very suitable for him. I think it is really hard to get tips from a book - I read loads and still felt lost. Doing ABA has been great as we now have a really clear idea of what to work on week to week and you can only really tackle one thing at a time.

I guess the first thing any professional would probably say about behaviour is to work out what happens before and after he misbehaves to see if a pattern. The other thing to look at is sensory issues - once you understand more about this and perhaps processing difficulties behaviours can start to make much more sense.

If you search other threads about BIBIC they are doing free assessments at the moment. We are going in Dec and they will do a 2 day assessment including lots of assessment of sensory issues which will give you a much more detailed view of your DS - we get 1/2 hour assessment from Outreach so 2 days of assessment will be bliss, they will actually be able to recommend something specific to DS rather than the usual one visual timetable suits all approach.

Good luck

Thanks for your tips. I have approached BIBIC to see what they might be able to do. On the Speech and language therapy I have been led to believe that there isn't any further help available / appropriate for DS. We attend a 'Play and Communciate'course as part of his assessment. What help are you getting?

DS's sleep is all over the place. He has difficulty settling -throws toys around the room and climbs on furniture - this can go on for up to 3 hours. On evenings when he settles early he wakes in the middle of the night to play. Last night he was playing and calling us at 4.30am!! Do you have similiar problems? Are there strategies to reduce the problem? Should we ask for melatonin/drugs?

Any advice appreciated.

My DS is on the bottom end of the spectrum and therefore does not receive much help!

He had a speech & language therapist at school. He has help from his SENCO and is visited by the school nurse to keep an eye on his weight, height, behaviour etc.

I did not give my DS any drugs. He liked screens. This was his calming toy. He would fall asleep in front of the screen with a warm cup of milk, his cuddly teddy & me!

If the screens were off - he was intolerable.

You need to find your DS's calming toy.

I was lucky that I had a friend who was a nurse in a home for autistic adults. It was she who picked up on his aspergers.

Just remember he won't be like this forever. My DS is a lovely boy now. 10 yrs old now and so affectionate & very clever too.