Sort of survey

[Lynden]

There's so much out there, and I often wonder if I'm doing enough for Logan, if I should be trying this, or that. I know its all personal choice but I'm interested in what everyone else has tried/uses.

 

So what I wondered is:

 

How old is your child and whats their diagnosis?

What treatments/therapies etc (diet/ABA etc) you've tried and whether they worked or not?

 

Thanks

Lynne

[PinkSapphireAngel]

Luke was diagnosed with Dyspraxia at age of 6 and was having physiotherapy from age 18 months and occupational therapy from the age of 4 which both helped in their own way, he also was given Piedro boots at age 5.

 

Then aged 9 he was diagnosed with asd/aspergers and was put on Risperidal at age 10.

[Bullet]

Tom has been diagnosed with ASD, with "difficulties with communication and social interaction appearing intense at present" (quote taken from educational psychologist's writeup). He is also very rigid in his playing, no observed imaginative play for a start, and has some sensory issues.

I do Makaton with him and use pictures to help his communication but apart from that nothing really. He's very happy most of the time so as long as he finds some way of communicating then I'm happy the way he is. If he gets to the point of noticing he's different and wants to make friends but has difficulties for example, I know he'll get lots of help and advice.

He is due to start at a Special Nursery next week as well.

[baileyj]

Hi Max is 5, he was diagnosed with Autism at 3. He's a happy loving little boy.

 

He goes to mainstream school with fulltime 1:1 support, that has been the best thing for him, we are lucky though as his 1:1 is very experienced with autism and had supported a little girl for 7 years through the same school, and she loves Max which is most important. They have a great relationship and he trusts her. The school have been fantastic, totally supportive and adaptive for all Max's needs and differences.

 

Max had Portage for 2 years before school, play therapy really and was brilliant, would highly recommend that.

 

He has speech therapy, but I think thats been a waste of time, his speech therapist comes to school once every half term, tests him, gives some suggestions and then goes. Pointless, he can use words, label things and ask for things, but has no idea how to have a conversation with us or especially other children, he quotes lots of adverts and cartoons, which weve learnt to interpret which is which for moods.

 

Apart from that we haven't really tried much apart from hints and tips weve got from this forum really, again, been the best thing, real life experiences of people in a similar position. The experts have done very little for us.

 

Sorry if that doesn't sound too positive, but in time you find your own way of doing things, trial and error.

 

Hope you find whats right for you.

 

Jo

[Paula]

My son is 12 and aspergers syndrome.

 

He also attended a play therepy type thing before the age of 2.He then went onto a specialised nursery unit and now hes at a special school.

 

We dont have any other help just the school.

 

Ive found that his moods and behaviour and ability to listen dramatically improved when i cut out of his diet basically all processed packaged foods.And started cooking everything from scratch.Not always possible or convenient so we slip up now and againe.No fizzy pop,hardly ever if never sweets and cakes but againe he does have the odd treat.It took a good 12 months to gradualy implement these changes basically into the whole families life.Were a whole lot healthier and slimmer for it.

Edited September 6, 2006 by Paula

[BusyLizzie100]

DS1 is 8 and has Asperger's, with elements of ADHD. DS2 is 6 and has ASD. Both have Sensory Integration Dysfunction, which was diagnosed prior to ASD dx.

 

DS2 had Physiotherapy at 10 months and began Occupational Therapy at 21/2. Sensory Integration Therapy has proved useful for him, but he could do with more of it on a more regular basis. He also had speech therapy from about the same age, but it was more of a watch and wait therapy ie nothing was done. He was dx aged 41/2. He had no extra support at nursery and it wasn't until he got a Statement to coincide with starting mainstream school that he really started to come on. He gets 15 hours a week. For him it has been finding understanding of his difficulties that has achieved most. His LSA is very sensitive and he has had two excellent teachers so far, but so much depends on the individuals.

 

DS1 began OT from about 4; his dx came at age 7. He is on School Action Plus at school but gets no extra support, although the school is about to apply for Earmarked Pupil Funding (a 2-year, limited funding equivalent to about 41/2 hours of LSA support). He has had OT regularly (annually!), including group work and a smaller group to help his handwriting. Some of it has helped, although not the handwriting.

 

Visual supports help both, but we have not done anything like ABA or TEACCH or such like.

 

Neither of my sons are 'severe' and we are generally left to our own devices, which is extremely hard because of cause their differences cause severe difficulties for them.

 

I'm not sure this helps!!

 

Lizzie x

[jen]

our child is 9 years diagnosed at 5 years with ASD and Sensory Integration with sensory modulation difficulties. Has full time support at school. He had OT with a qualified sensory OT for several years, is now on maintenance OT. This has made such a difference.

This year we have tried enzymes and although I could not see any difference his school reports he was more relaxed, could concentrate, sit still and was able to listen more. His quality of work had improved. The majority of my sons problems are within school and trying to get through the school day due to his sensory problems.

 

We have also used coloured glasses for a few years which makes it easier for him.

 

We also use melatonin

 

Jen

Edited September 6, 2006 by jen

[Bullet]

I forgot to say that Tom had a nursery nurse who came round during the summer term this year who gave us pointers on communication with him. We were also offered a place on the Earlybird course but unfortunately with two young children and it being in a different town it proved impossible to go to.

I hadn't really thought about the diet as I've just done it as a matter of course, but he doesn't get sweets or pop, is very limited in cakes and biscuits, crisps are a rarity and he doesn't have junk food like McDonalds.

[zaman]

This is an interesting thread - I'd be particulalry interested in alternatative treaments other people have used, as I have resorted to them after not having much help with accessing mainstream help.

 

My son is 5, diagnosed at 4 with ASD.

 

The positives:

I have been using Fish Oils (EyeQ) with quite good results re improved concentration.

 

Cranial osteopathy has really helped with his sensory integration issues.

 

 

Not sure:

I have recently started using probiotic drinks as I have read they can help with the leaky gut. Don't know about that one yet.

 

the useless:

Colloidal (sp?) silver. Costs a fortune, tastes like stagnent water. read really good things on the web about it though (enough said?)

[smiley]

Great thread

 

Son, 7, dx'd Aspergers, Dyspraxia, SID, depression/severe anxiety.... (possible tourettes and ADD - waiting for 'official' assessments)

 

Help/treatment;

 

No OT They don't have the funding....grrrrrr.

SaLT is great, comes into school regularily and advises - always on the end of the phone and i can see her out of school if need be (TBH haven't needed to yet).

Pead - again, great. We see her every three months - can make it sooner if needed.

Pychiatrist - monthly sessions, she's lovely too.

 

Infant School special needs assistant (mainstream) during YRr and YR1 was trained in ABA. It seemed to work for him. Alot of what i did naturally then was similar - so i'm not sure if it was ABA or just because it was like mum!

Has full-time 1-2-1 support now (still mainstream, but working on it...), differenciated curriculum etc.....

 

I've tried -

Fish oils for around a year. They worked initially and i could see a small improvement. But this soon wore off. I am trying him again on a higher dose now.

Dairy free for six months - this made no difference unfortunately.

Was going to try GFCF diet, but was told by paed that if he didn't respond to dairy free he wont to that.

 

We aviod any artificial colouring, preservatives and flavourings. This does seem to help him (though we've lapsed a bit during the hols - ooops!).

 

PS - spell check wont play and ive had a baileys - sorry for the spelling

[LizK]

Adam, nearly five, diagnosis of ASD

 

From the NHS we've had

 

- speech therapy:sporadic. Would be more effective if more frequent and with an ASD-specific SALT

- OT. We've had one assessment and maybe will get one or two therapy sessions if lucky

 

From education

 

- home visits for a year from preschool teacher from the Early Yrs SEN service who did playbased work with Adam. Really useful. She worked upon his communication and concentration and helped pave the pathway to starting school

 

- at nursery he had 3 hours additional funded help a day for 5 months and the staff did a playbased programme with him and sometimes a couple of other children working on play, communication and social skills. We saw a big improvment during this time in his play and hin integration into nursery

 

- school. He is fulltime 1-2-1 and school are taking a similar approach to nursery doing play based activities. He is starting a social communication group this term run by his LSA too. His school day is based around his needs which is great but am a bit concerned about how that will change when he moves into Year 1 and it becomes more academic but will worry about that closer to the time!

 

 

Things we've tried

 

- has 6 sessions private SALT over the summer which was useful. She has left me homework to do with Adam!

- to help facilitate communication at home use visual timetables, visual prompts, structuring his time, More Than Words,

- casein free, seems to have helped his concentration, don't get the really hyperactive peaks anymore

- fish oils - may have helped his concentration but wrecked his sleep so stopped

- in holidays or weekends try to spend 20 mins a day doing something developmental with him, currently focusing on his communication

 

Things we're thinking about

 

- private OT to do some sensory integration work. The more I read about sensory issues the more I wonder how much sensory issues lie at the heart of autism and that is my latest 'mission'. Reading about how some believe that the abnormal sensory perceptions of some autistic children affects how their brains develop in the early years so it seems to make sense to get help with that as soon as possible.

 

- auditory integration/sound therapy. Adam is hypersensitive to noise which cause shim a lot of distress at times. He has issues with auditory processing and sequencing and I wonder how much the fact he can't discriminate foreground and background noses affects him

 

- gluten free. Seeing a dietician about this but not sure whether going to go ahead or not

 

Think we do a bit of this and a bit of that really sometimes more than others. Did look into ABA but didn't like many things about it so gave it a miss. Sometimes wonder whether we should be doing more or some sort of formal programme but equally I want Adam to have a childhood rather than be in therapy!

 

Lx

[oracle]

Our intervention has been Home Education DIY style. No help and no input from the LEA at all.

 

However we do have access to the Out Reach Team and they do come when I need them and I have an excellent raport with them and have found them to ber very helpful and useful. They can point me in the direction of resources and because I want things to work out I take their advice - which is more than the schools usually do They have helped with Social Stories etc and Matthew loves our support worker

 

We also get speech therapy Matthew has a full assessment on Tuesday, which again Matthew enjoyed , and I am waiting for the feedback. First thoughts were that he has a high level language disorder.

 

I feared that HE would stop this kind of intervention but for us it's worked out better than I had dared hope.

 

We saw his Pead annually or more if needed but sadly she is now very poorly herself and on long long-term sick leave The Pead that has taken her place is just signing us all off because autism is not an illness

 

We looked at things like Connective Therapy and Emotional Literacy and take bits from both and work with then with Matthew and David.

 

We don't get OT although I think Matthew needs it and we have never had Physio

 

Oracle

 

PS spell checker is not working - sorry

[Suze]

Son 11yrs dx ASD/AS, dyslexic, dyspraxic, aud process disorder.

 

Statemented and attends asd unit at high school.

OT therapy course

OT handwriting course

Glasses/coloured overlays for reading

Cranial osteopathy(saw no great change)

Use melatonin for sleep probs.

[Lynden]

Thanks everyone. Its really useful to see what others try. I think we're doing okay really I guess :-)

 

Logan has had SALT and physio since he was 14 months old. Physio only ever monitored him but did refer us to orthotics.

 

His SALT has been fabulous and we continue to see her once a fortnight, and he'll now see her in nursery too as she's there every wednesday.

 

Developmental nursery is one on one at the moment, but only ever has a ratio of 2-1 max.

 

We have just been assigned a new OT so am hopeful for good things from him as a lot of Logans problems come from sensory issues. Am filling in a full sensory profile for him today.

 

We've tried melatonin which didn't work. I've done the makaton course but no luck with that, but we're having good results with PECS and are introducing visual timetables and stuff also.

 

I would like to think about sound therapy, and possibly play therapy.

 

In terms of diet we haven't changed his yet because its so limited. We did use fish oils but saw no difference.

 

Lynne x