High Functioning Autism, Aspergers, Dyslexia, Dyspraxia........ take your pick.

[JollyPirate]

So at nearly 7 DS has now seen a paediatrician who spent an hour with us and was great. DS is having definite problems in school - cannot yet read, writing is hard due to fine motor skill problems (hyperflexion to fingers), attention and concentration is a problem and reading social situations is hard for him.

Two weeks ago we saw an Occupational Therapist who told me that DS likely had DCD (developmental co-ordination disorder). The OT was great and is seeing DS in school and is going to refer him into one of the motor skills groups they run. He said DS was NOT on the autistic spectrum. The school say DS does not really fit into any box but that helpers who are new to the classroom often ask if DS is on the AS.

Yesterday the paed said he couldn't rule out HFA or AS. He is referring DS into the social communication group as this is onviously an area of difficulty. He also noted that DS has definite obsessions at times and sometimes poor eye contact. He also thinks DS could be dyslexic.

He knew I was a HV and asked me what my thoughts were before discussing HFA and AS. This was nice as I was able to really discuss all my anxieties for my DS. He did say also that once we have done all the DSM questionnaires that there may be no real diagnosis at all.

The thing I am wondering is - how will all this affect DS as he grows up - will his social skills ever improve or is he destined always to find this hard. The thought of him feeling isolated as an adult fills me with devastation as that must be so lonely.

I am increasingly worried for him and his future. Now no longer sure which way to turn. The paed wants to see DS again in 6 months and is asking for a report from the school as well. . How will DS cope with life?

Hi Jollypirate

Have similar worries. DS2 (8) is hfa/adhd - to a point I think he can be taught the blue print of many social situations but not all, and, realistically, I guess he will struggle at times but he is also very resilient.

I am hoping that all the intense help he has had will stand by him and make a difference, however, he will always have us to support him no matter what.

I try not to think about the future too much, stay in the here and now because even with my other dc's (nt) there are no guarantees that they will find their niches either.

I think the 'not knowing' stage you are in is particularly difficult and stressful - at least I found it hard so sending an unmumsnet hug x

Thanks for that HM . Such a worry when we see them stuggle isn't it?

It is the "not knowing" as you say which is hard. Trying to be more positive today and remember that DS still has a lot of maturing to do yet.

Also realising that there is all sorts of support available for him which was not there when I was a child.

Hi
I've got one with all those things!

He's 14 now and lovely. He still can't handwrite but other stuff has got a lot better. Can't recommend OT enough.

Good luck. Keep firm boundries for him. Keep explaining stuff. Keep his self esteem has high as you can and avoid siuations if necessary. He might hate sport which is difficult when its a boy as it seems to be an instant communication thing with them but then again he'll discover something along the way.

Gotta rush, sorry.

Thank you FM

It's good to talk to people who understand.

Dont know if this wil be helpful, but this is helping us (11 yr old with aspergers,struggled academically, socially etc).

We found sensory trained OT who found 'retained reflexes' and 'difficulties crossing the midline' - google them - and have been doing various exercises (15 mins day at home) for about 6 months and have also started 'therapeutic listening'. We are seeing very gradual improvements in mood and sort connecting in to things.

If he is on AS and even if not - he can be taught social skills but might not gain them naturally - from what I have read the earlier the input the better the outcome. Lots of schools have social skills groups run by speech therapists and some have lunchtime lego / construction clubs again which can appeal to those on AS. To work well really need staff who are trained to facilitate peer play etc. Peer play can become complicated quickly eg whats cool, whats not and the nuances hard for kids on spectrum to get, so the earlier you intervene the better but as with anything in the UK often social skills are neglected or left to TAs who don't have the training to really make a difference. If I were you I would talk to the school about what they can offer - ask them to look into training specifically on social skills / facilitating friendships / set up clubs - he won't be the only child in the school who could benefit - and poss ask to see a ed / clin psychologist or speech therapist who has experience in this area - his ability to form genuine friendships is much more important to a good quality of life than say times tables and insist it really takes priority over the academic - make sure its on the IEP etc. Younger children are also more tolerant - as you move towards secondary it will get harder for him to keep up socially and be included so its not something you should put off - the complexity of play of a 5-6 year old to 8-9 year old is quite a leap. I have seen a lot of children with AS who are doing well academically, get by ok at school but have no real genuine friends, as you say the risk of anxiety, depression etc is high for kids on spectrum and will be higher if they don't have healthy relationships to support them. We have a great clin psych who really pushes social skills as important from day 1. Find out if there is an AS parent group often they run activities and you don't need a diagnosis to go. You can also do "playdates" at home - invite a child over and if this is something he struggles with do a structured activity eg make something and be there to model the sort of phrases or questions you might use to get a conversation going - keep it short say 45 mins - explain to the parent perhaps a bit so understand why just coming for short time. Then build up. My son is 3 and totally avoids social contact (ASD) so this is going to be a big focus for the year. But we are using ABA approach - again read up about it and see whether its for you. Just be aware there are lots of things you can try but most probably won't be offered until you have kicked up a fuss. Like you I don't want him to end up without any friends or incapable of a relationship etc. If the school seems clueless ask them to get advice from autism advice service / speech therapist / ed psych. Do you think he would benefit from 1:1 at break times? Also look up social stories if there are particular situations he doesn't "get".

I've been through the same as you. Ds1 (also 7) was originally suspected to be autistic, first dx with hypermobility then dyspraxia shortly afterwards. Recently we've gone back to autism again. The paed now thinks he is def autistic and he is to be formally tested.

It might be worth looking at pevasive developmental disorder, which is another of our possibilities, as like your ds, mine has always been hard to pigeon hole into one particualr box.

*pervasive

hi - just want to say something to give you some hope.

my DS is now nearly 18. he has a dx of aspergers, dyslexia, dyspraxia. he was dx at 7. he is now taking 4 A levels, has a part time job computer programming, has a very very busy social calender and plans on going to uni.

when he was dx his social skills were terrible - i mean terrible. he had a hard time through school and didnt get the support he really should have had, they didnt even dx the dyslexia until he got to college last year! but he has absolutely blossomed this last year. when i think back to how he was at 7 and look at him now i can hardly believe its the same person.
remember - autism is a developmental condition - it means they DO learn, just at a slower rate than their NT peers.

hang on in there. its not all doom and gloom i promise you.

Thank you all so much for your thoughts. It really helps to have some ideas and suggestions from other parents who understand what this is like.

I have chilled a little bit and reminded myself that DS still has a lot of growing and maturing to do. The social communication group will help too.

I have a dyspraxic child whose problems are milder than yours. However I would say that while the early teenage years have been hard life does improve for them as they get older. They develop more slowly but that becomes less of an issue as other children start to develop more slowly and they catch up. Get all the help you can now.

Hi JP

I have a child with AS and a child with what I think will wventually be dx'ed as dyspraxia (still using the term here)

There is so much overlap! basically AFAICS the main difference between the boys (excepting adiditonal stuff ds1 has) is theory of mind issues. Perhaps that is the key?