ASD/Autism/Aspergers help please - where do I start?

[Bucketsofdynomite]

Please help me. After a fraught day out today I have finally given in to suspicions that my DS (26m) is not 'normal', that it is becoming less and less likely that he will become 'normal'. Going through a questionnaire thing we found, DH & I would say these are among typical traits for DS:

Does not respond to his name
Cannot tell me what he wants
Language is delayed
Doesn't follow directions
Appears deaf at times
Seems to hear sometimes but not at others
Doesn't point or wave goodbye (Starting to though)

Seems to prefer playing alone
Gets thigns for himself
Is very independent
Has poor eye contact
Is in his own world
Tunes us out
Is not interested in other children
There's a real lack of empathy - I've always said that people are just furniture to him, you're either in his way or you're not.

No babbling by 12m
No pointing/waving by 12m
No single words by 16m (I lied on his 18m check up)
No 2word phrases by 24m

Behaviourwise he can be unco-operative but doesn't really tantrum, just lies down and goes floppy. Walks on his toes but isn't hugely clumsy, just breaks things on purpose to see what they're made of I guess.

So where do I start? Do I get an HV round or do I go straight to GP? What happens if they agree there's something wrong? I don't know whether to feel hopeful or scared or what, at the moment I'm just sad because I'm finding him so hard to cope with. If they say he's normal, what kind of parent does that make me?

[Troutpout]

Aww slow down Buckets..It's hard isn't it..when it finally hits home.((buckets))

Must admit...first thing i thought was hearing...have you had that checked?

Any way...what i wanted to say was...It makes you the best sort of parent...the sort of parent who is trying to do the right thing by her child...that's all.

He's still quite little...some of the things you talk of...may not have kicked in yet (especially the being interested in other children)...however i would recommend speaking to your gp about him... make a list of all the things you have talked about here and ask for a referral

I have only just started on this route for my boy and he is 9 so someone may be along soon who can give you more help (just didn't want to leave your post all lonely)

Some of what you describe is exactly the same as my boy at that age ( all bar the language bit)...and i only hit this point when ds was rising 5 so if there is a problem (there may not) you will be putting things into action straight away.

Good luck

[coppertop]

Is your HV approachable and easy to talk to? If so then I would speak to them first and tell them what you've told us. If ds had a check-up at 18mths then I'm guessing your area doesn't do checks at 2yrs. If the HV isn't that great then I would ask the GP for a referral to a Developmental Paediatrician.

I must admit that from your description he does sound very similar to my ds1 at the same age and he was later dx'ed with ASD. In the meantime I would also contact the portage service to ask for a portage worker to come to visit you and ds. You should be able to find their number by googling "portage" and the name of your town/city. They usually have a lot of good ideas about things to try which might make life easier for you. It might also be a good idea to get ds' name down on the waiting list to see a speech therapist. If things improve and you no longer need SALT you can always cancel it again.

Good luck. In the meantime keep posting on SN if it helps. xxx

[Bucketsofdynomite]

Thank you so much for not saying 'he'll grow out of it'. At first glance he just seems like an extremely busy, focused child, happy as Larry on whatever project he's come up with, but this week as I've been wrestling him back into the kitchen with his dinner (he's quite big for his age), I could just see myself wrestling him into social situations for years to come.

[moondog]

Buckets,I would go to your HV.They tend to have a good working relationship with peopel like OTs,PTs and SALTS (of which I am one,working in this field).

They can sort you out with reevant assessments and advice.

I konw it's hard,but believe me when I tell you that if there are difficulties,early intervention can make a huge difference.

This section of mN provides a welath of information and valuable support to.

[BeckieB]

My son was diagnosed with Asperger's at age 3, and as another MN said, early intervention is so important.
I found the diagnosis devestating and a relief all at the same time. If your ds does receive a similar diagnosis there is lots of help out there, some of which you will probably have to fight for.
Good luck and be strong for your son.

[mummytosteven]

Agree with the others. Don't let HV/GP fob you off about his speech - push and push for a referral for SALT. I was concerned about DS speech at 27 months and was completely and utterly fobbed off, with result he didn't even get onto SALT waiting list until he was 36 months. Far better to get on the list now, and then if things improve dramatically, cancel the appointment, than risk being fobbed off till your kid is 3, then stuck on a 10 month waiting list. In most areas you don't need HV/GP to permit the referral for SALT. Also if you are anywhere near a Surestart area, they often run free Hanen courses (9 week course looking at how best to avoid speech delay/how to help your child learn to speak, which is something you might want to explore if you are on a lengthy waiting list for SALT. (Hanen are a Canadian organisation specialising in helping children with speech delay)

[castlesintheair]

I would ask your GP to refer you to a developmental paediatrician. You may be able to do this via your HV depending on where you are in the country (here it's normally done via GP). They will make a full assessment of your DS and possibly be able to give you some immediate answers. They will also be able to refer him for hearing tests, to speech and language/occupational therapists etc, if necessary.

Please don't be scared. Whatever the outcome, your DS will benefit from early intervention if he needs it.

[Bucketsofdynomite]

Have got an appt for Thurs with GP, will be goood to get a professional opinion because I'm still in 2 minds, maybe he's just a weird kid like we've always said.
He actually said Grandpa today (Bampa) but still wouldn't look at Grandpa. Seems to be an emotional thing with the people he loves, he runs on the spot with joy when he sees them but then turns away at the last moment like it's all too much to handle. Family just take it as a compliment now.

[kitegirl]

You've got some good advice here already. The paed appointment is crucial as s/he is the one that can then refer onwards. Your DS does sound like mine when he was the same age - he was diagnosed with ASD. I know how you must be feeling right now. If he does end up getting a diagnosis of something or other, come straight back here and we can give you some pointers as to what to do next.

Take one step at the time. Make sure you are not alone, that you get support from where ever possible, and that you go easy on yourself. This has nothing to do with your parenting.

[shoegal13]

i have a child of 6 with autism. your child does show many symptoms that mine did as a baby. i had to push & push for finn to be sent for a full assessment at the child development centre at my local hosp. my hv was a waste of time. i knew he was different from 6 wks on if not before & he was diagnosed before he was 3. remember that if your son gets a diagnosis he will still be the same child he ever was or was meant to be. there is no other child trapped inside him waiting for a cure! believe me acceptence is half the battle & then you will find the strength to go on from there.

[Kelly1978]

I'm sorry to hear you are having such a hard time. I agree with getting the paed referral, and try to get a multi disciplinary assessment so that you can get an overall idea of what he needs and how to support him. Also, mummytosteven mentioned sure start, and I agree that they are a very good group to contact. ds1 actually had home visits for therapy from a SALT provided by them.
I'd try to get him on waiting lists as soon as you can, even if he turns out not to need everything, as time waits for diferent therapies can be months and months.

[dillpickle]

hi. My ds was diagnosed with Aspergers age 4. He was doing pretty much the same as your son by the sounds of it but also had very bad obsessions which would take over his life. I felt very lonely especially when all my friends boys seemed so 'normal'. He is now nearly 11 and is doing amazingly well - far far better than I ever imagined when I watched him as a toddler and felt despair. Getting an early diagnosis (and we had to push for this as I was told by 2 health visitors I was being neurotic) was the best thing we ever did for him. He has had brilliant one-to-one help at school and has, in the last 2 years, made some good friends. He is a whizz on the computer and wants to be a website designer. I am very proud of him and wouldn't change him for the world. Sorry for essay but just know how you must be feeling and wanted to put a positive side forward. xx

[benjaminsmum]

Hi, my son is three and for the past year or so I have been worried that his social skills are really poor. He just doesnt get empathy or other children. He is better with adults. I was referred by the gp to the paed but he referred us to the wrong dept. I havent made another appointment as I am not sure I want to hear the answer either way, one way he may be labelled as 'having something wrong' on the other hand I am just a bad mum, neither of which I really want to hear. So know how you feel.