I'm not sure what to say or do (RE: Autism and the like)

[AP]

We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.

I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting

She told me I should visit my GP, what on earth do I say? And what will they do?

I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should

 

[Creative]

How old is Alex?
When My eldest was 18months, I realised he had special needs. I suspected autism. He also had delayed speech.
I kept telling the HV and GO and ended up getting thought of as a over reactive parent.
I was lucky that I had contacts at the local hospital where I'd trained and so I wrote to the head of paediatric special needs and asked him to see my son. He agreed and after meeting Joe, he wrote to the GP and asked for a formal referral.
It was still a fight to get things done and Joe saw audiologists, speech therapists, dieticians and enuresis specialists. It was all a mishmash by the time he started school and they just ignored his issues.
We took him for a dyslexia assessment at 7 and luckily he was assessed by a educational psychologist who confirmed the dyslexia and also gave us the diagnosis we'd looked for for so long. Joe has aspergers, dyslexia and sematic pragmatic disorder.
At that stage I was considering home educating as the school were not interested.
We moved back to Yorkshire ad from that point Joe made progress. he was given in class support and learnt in his own style with the heklp and recognition of the school LEA etc. He was statemented within two months of starting the new school.
His learning path has been hard, has relied on lots of parental input, but he left senior school two years ago with o and a levels and has nearly finished a two year lab technician apprenticeship.

Your best bet for missing out all the hassle of the early years is to contact your education authority and ask about getting assessed for statement as once the money is in place, the school can provide the help and support needed.

 

[Midnight_Fairy]

Hiya,

It does seem to also be a postcode lottery too

My son was 2yrs 9mths when I went to GP. I actually went via portage, have you heard of them? (they are amazing). I then said my concerns in a appt and they sent a refural to a peadiactrican. We saw the pead every 6ish mths for about 2 yrs, when my son was 4 we finally had a refural for a ADOS autism assement. When he was 5, he was diagnosed.

I will say that having a diagnosis didnt really change the help he gets at school and it does not automaticly mean a statement

 

[AP]

Midnight_Fairy I read an old post of your that mentioned portage. What is it? I'm in Scotland, (if that makes any difference)

You're right though, Alex is getting probably the same help she would if she had been diagnosed, but im no expert I guess. I'm scared people will drag their feet - it seems Alex is the last of her preemie group to get help, when she was one of the ones that had the biggest issues.

 

[Midnight_Fairy]

Just keep on at them and communicate via letter so everything is tracked and dated.

Portage come in and help with 1:1 help and stuff but I dont know if they cover Scotland, you could always google and contact them. Worth a try?

I didnt really have anyone on my side, they all thought I was being OTT at first so please dont worry if you feel like this and also keep a diary, cant stress that enough x

 

[AP]

I just had a look at portage, its actually very very similar to what the preschool visiting team do, and who I spoke to today. x

 

[BabyJ'sMummy]

I just had a look at portage, its actually very very similar to what the preschool visiting team do, and who I spoke to today. x

I'm in scotland, whereabouts are you? We don't have Portage in Scotland. In my area they don't diagnose until at least three but they start the assessment process and then when they reach three are referred for diagnosis to the diagnostic team (obviously this is if they suspect ASD). I'm in Renfrewshire. DS is getting assessed at the moment and I've been told that diagnosis or not he will get all the help he needs regarding early intervention. Either get a referral from your GP or Health Visitor. xx

 

[Peanut78]

We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.

I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting

She told me I should visit my GP, what on earth do I say? And what will they do?

I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should

I'm not currently in the UK. We were in South Africa at the time my son's condition was diagnosed. We were referred to a paediatric neurologist by the paediatrician on the basis of "global developmental delay". They then found his condition on an MRI. Having a known condition has made a big difference for us in terms of opening doors for the services he needs. We are in a private system, so it is different thou. The fact that we know what his condition is and what is causing his delays, makes it easier for the therapists to tailor a programme for his needs as well.

Your daughter had a brain bleed after birth right, with that in mind surely your GP would refer you for help...

 

[Marleysgirl]

We don't have Portage in some areas of England either! I think they set up where the local authority doesn't provide suitable pre-school care. So here in Manchester, Andrew is under the care of the "pre-schools special needs service" run by the Council; a mile down the road, Sherry's girl Millie is under Portage. Comparing notes, it sounds as though both provide similar support services.

I'm sorry that you feel Alex is the last to get any help, AP I can't remember how Sherry came to find Portage; but I do remember that Andrew's referral to the PsSNS was as a result of his epilepsy in his first year, the epilepsy nurse was worried that his development would be delayed until the epilepsy got sorted so she arranged our referral ASAP (as it was, the epilepsy was cured quickly).

I occasionally wonder whether Andrew is showing autistic traits, and running some of his behaviour through various online tests, it would appear he does ... But to our mind, he's got enough labels already (hearing loss, developmental delay, small-for-age, dietary challenged ... hey, let's add 'paediatric developmental flat-footed' seeing as he's now under a podiatrist too!) so I'm not inclined to add autism to that just yet.

Does Scotland have a similar assessment scheme to us? (the Statutory Assessment of SEN) I've just fought - and won - to get Andrew's assessment started now rather than waiting until he reaches school age.

 

[indy and lara]

Sandi, the Early Intervention team in Edinburgh are just brilliant. I cannot tell you how much help I have had at work from them. There are children diagnosed pre 3 in Edinburgh as we have had quite a few kids into Nursery with a diagnosis. They usually work with school and home to make sure we are all on the same page and all using the same systems. While it won't necessarily change the support you have at home it will change the help Alex gets at Nursery and into school. If a diagnosis is appropriate then I would suggest to you it is vital to have before P1 as without it, due to the state of the budgets in the Education Dept just now, Alex would be struggling to get any hours allocated at all. You know where I am. Not back to work until August but plenty people I can ask for you.
x

 

[AP]

L, that's reassuring. I'll be in touch.

The head teacher popped by yesterday and met Alex (I was impressed she decided to come up personally!) and will arrange a meeting with all of her therapists (speech and all the rest) and work out Alex's needs.

I'm scared to go to the docs, apart from one in particular, they palm me off for everything. And getting an appointment is like a Willy wonka ticket. by the time they give me my pill I'll have given birth to baby #3

 

[Tiff]

I totally understand hunny. We're going through the motions right now, but there's a crazy long wait list!

We decided to go privately as we KNOW something is up with her. We have Resource Teachers, Occupational Therapists, Speech/Language Pathologists and one psychologist who all say the same thing. Now I have a roadblock because the other frickin' psychologist refuses to see her to diagnose her. Because she's "too young". FFS she's 3.5!!!!

One thing that was said to me is that you gotta fight for your kiddo. No one else will, and I'm seeing it firsthand right now.

 

[AP]

A charity worker who helped me of late said the same. It's unfair

I went to the docs (for myself) and briefly mentioned I'd be popping up with Alex. I managed to get 1 doc whos nice, and she said this would be fine

 

[JASMAK]

I would simply ask for a referral for a pediatrician. Hugs x x. My daughter was diagnosed at 2 years, 10mths....but her first 'appoinment' was 18 months. Its a hard, trying road to diagnosis, and almost a relief to just have the diagnosis and just be on with things. I am here if you need me!

 

[Lottie86]

I know certainly up here it's not something they like to diagnose at all and the only toddlers I know who have been diagnosed were severely autistic.

Findlay has an awful lot of traits of an ASD (to the point that I have had other Mums of children who have been diagnosed asking me how old F was when he was diagnosed!) but yet his development consultant and all his other therapists have never mentioned anything at all.

The other thing to remember is that some of the 'traits' of autism are just normal toddler behaviour and it is only if they carry on well past the normal age range that it starts to be looked at as a possible problem.

 

[faun]

I took Billy to the GP after the health visitor told me she suspected he has ASD traits and needs a specialist peadiatirc review. The GP just gave him a box of toys and watched him for 10 mins then told me he agrees with the health visitor and sent a referal letter for me. I got a reply saying i had been added to the list and to expect an appointment in october!

 

[vixxen]

May i ask how many of you babies have been premature?, my oldest has a diagnosis of ASD and ADHD and my younger son is going through the system to get diagnosed now.( not premature both 8/9 when problems became really noticable by others)
The reason is as this one is expected to come prematurely as blood and oxygen flow is compromised , and i know there is quite a link with being early and ASD how likely it really is.
Oh and how early did you notice symptoms, i noticed when they was around 3 that they were different but could get no help or support until they was older.

 

[AP]

There is certainly an increased likelihood if you have a premature baby. Consultants told me that.
Alex was a 27weeker but had a ivh due to lack of oxygen so it's hard to tell what is causing what :/

 

[Aunty E]

We're skirting round the edges of a ASD diagnosis with Imogen at the moment. For us, it's coming through speech therapy, which we asked for through our health visitor. Imogen was starved of oxygen during her delivery, but came out in fairly good nick and was only in SCBU for a day. She's hit every milestone late, apart from smiling I still think a lot of herr behaviour is just 'her' if you know what I mean, and I am suspicious about a hearing loss.

 

[Kissel]

We have had some great support of late from the education dept. We have a lady from the pre-school visiting team coming up every now and again to help us in the right direction with Alex. We sat down today for a chat and it was reassuring to know just how much help is out there for us.

I had asked her about things like autism, and she confirmed Alex does have some traits found in children with autism. My key concern is just getting intervention early enough, but at the same time it wouldnt reeeeally change the amount of help we are getting

She told me I should visit my GP, what on earth do I say? And what will they do?

I have bad experiences with GPs etc just now, they are really letting us down and im constantly fighting to get her seen as she should

I am in America, so I know this could be different from your healthcare system. I am a behavioral therapist who works with children with ASD/developmental disabilities. If a child gets diagnosed they are eligible for government funded behavior therapy. We have had many families bounce from pediatricians to developmental psychologists. Child psychologists tend to issue the ASD diagnosis in this area and some are much more lenient with diagnoses. I have not heard of a GP/family doctor making the diagnoses. They don't seem to know what to do with children diagnosed with ASD. Ask for a referral to a child psychologist or developmental psychologist. You can always look for a second opinion and your GP should not give you grief over it.

Next, look for a BCBA in your area that does behavior therapy called early intervention. If you get adequate services soon enough then your child can "catch up" (developmentally) to peers in the same age group. It is certainly not unheard of to have a child receive early intervention and no longer require any services by the time they reach elementary school. They "grow out" of their diagnosis sometimes. It is not a guarantee and it does require work on your part, but it certainly does work over time. PLEASE avoid vitamin therapy, anything pertaining to chelation, and any special diet that your doctor does not tell you to follow. They will not work and your child can incur serious physical harm!!!

Good luck finding a psychologist and getting some help. Patience, patience, patience!