AS assessment for home-educated children?

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Has anyone been through the experience of getting their home-educated child(ren) assessed for AS/ASD?

We have been to see the child development unit for my youngest child, and they seem unsure of how to proceed because they don't have recent input from school teachers or other school based professionals. I provided a very long and informative report, covering her developmental history and traits since babyhood. I also have informed them of relevant comments both verbal and in report form made by her teacher when she did attend school two years ago. I have offered input from two people who both have either experience of working with children with SENs or currently work in childcare settings, who have witnessed my daughter's behaviour (obsessive and meltdown). Despite this, because there is no up to date input from a school setting, they said they "are going to have to think about how to proceed". I feel as if they are not trusting what I say. I know my daughter better than anyone. I have reported her behaviour very factually and I do not exaggerate in any way.

Added to this, when she was in school, she was extremely compliant, and her academic work was good as she's very intelligent. So from a school perspective they wouldn't see a problem anyway. But I know from research that this 'phenomenon' is known about in AS children, Tony Attwood for instance speaks about it and calls it the "Jekyll & Hyde" behaviour, where they hold their meltdowns and other behaviour in all day at school and release it at home, and other parents on this forum have spoken about it in their children. Her teacher at the time did comment to me that for a long time after starting school, she would stand alone, not interact with other children and would look sad. My daughter was extremely unhappy at school, she had no friends and would play with her imaginary friends virtually every play time. Her teacher put her behaviour down to the fact that she had not attended any pre-school nursery and needed time to get used to the school setting. I know this is not the case. My eldest child who is also due to be assessed for AS, attended many different nurseries and playgroups before starting school and she also had social problems and was unhappy at school. I feel as if the professionals are unable to comprehend anyone outside of their normal way of approaching it.

I just wanted to know, if you had been or are in this situation, how the professionals assessed/are assessing your child in this context.

Because my daughter suffers with a lot of anxiety and phobias, the child development unit are going to liaise with the CAMHS (Child and Adolescent Mental Health) people as to how to best address that, but this doesn't address her AS assessment needs. This is only part of the 'puzzle'. As I have AS myself, I know that anxiety is part and parcel of AS or is considered co-morbid depending on who you speak to.

I don't want her assessment to get held back in any way just because she is home-educated. Her behaviour is frequently so extreme (with meltdowns, obsessive ranting/questioning etc.) that even though I know she was very unhappy in school, I am seriously considering putting her back, because of the negative impact she is having on my health and wellbeing (which in turn impacts on the family). It's the last thing I wanted to do because I don't believe it solves anything for her, but it will give me a desperately needed break. All the professionals seem to react to home-educating as if it might somehow be the reason she has socialising issues, which is not true (she resists socialising although we do so anyway), and I don't want them looking at the wrong reasons for her traits and behaviour, as this does nothing to help her.

Input appreciated.

Last edited by whirlingmind on 07 Oct 2012, 1:29 pm, edited 1 time in total.

Do you have friends who spend a lot of time with her? Maybe even a family member that doesn't live with you. Are there people she socializes with regularly?

It could just be that the intake person lacks experience, and doesn't know what to do. I'd tell them that she isn't in public school and therefore you can't. Request that they have the doctor call you to find out what he or she needs from you. Also, if they aren't willing to work with homeschoolers, find a facility that is. Make sure they are experienced in evaluating kids on the spectrum.

Hi, we see another home educating family regularly and they have witnessed her meltdowns etc., but I get the feeling from comments and questions they asked that the child development unit are only interested in input from professionals. You know how people in 'the system' can only follow their set rules and anything else becomes difficult for them. They are apparently the people who do the autism assessments, there is nowhere else (UK) locally that does it due to her age (seven) and we can't really afford private.

YES I agree...they are ONLY intersted in professional input, that has certainly been the case for my son. My son is homeschooled, and while he has AMAZING behavior in therapists offices as well as when he was in pre school (small size special needs class), out in the real world he is a completely different kid. It was very hard to get him a diagnosis, as pretty much every professonal he interacted with was impressed with his intelligence, insight and copperation in their offices/therapy rooms.

It took me a long time and a lot of different professionals to get one to actually listen to what my son and I were saying. We actually started to go to a social worker for counseling...and she got to know more of him, and really heard me and she started to research his symptoms, etc...it really got the ball rolling. HER input was listend to by a psychiatrist, along with his history and meetings with the psychiatrist, he got his diagnosis. I have no doubt if she handnt started the procedure and gave HER input of his symptoms, we would still be searching today!

Just keep going until someone listens. It can be very hard. I also find they dont particularly care about your home life with your child. They are all concerned with the performance in a classroom.

I recently hooked up with a bunch of homeschool friendly professionals by putting word out to my homeschool groups. You would be surprised how many others have been thru similar experiencs and can offer adcvice or know a good clinician that works with homeschoolers!

good luck...

Well, there actually is a good reason for that. Since the SD is footing the bill, they are concerned about the educational impact of the disability. The rest of it (non-educational impact) is presumed to be the parent's responsibility. When I think about it logically, it makes sense.

Of course, I am unfamiliar with the laws governing such things in the UK, so in that regard, I am a bit stuck on how to answer. But I do have a question? What is the goal of the evaluation? I mean, I understand it is to see whether or not she has AS, but how will that information be used? Do you get some kind of extra support or access to resources that you cannot access now? I am also wondering if you could get her to some kind of university-based center that has people who specialize in autism? There is no reason why you shouldn't be able to get a diagnosis without a professional teacher involved. It seems like it is a weakness of the program you have taken her to. Also, could you videotape what happens at home? That way they can "see it for themselves."

Since my son was homeschooled since K, I did NOT go to the district for an eval. this was every professional I took him to. Neuro, social workers, psychologists, etc...none school district affiliated. I was going thru our insurance. They still didnt care about home life. How was he behaving in school? Hes HOMESCHOOLED???? Well, then send him to school and let THEM deal with it! That was the message over and over. Basically they saw nothing and if they listened to me saying but he does this in stressful situations, etc...they would say then send him to school. They DIDNT CARE! it is disenhartening to know they dont care at all unelss its impacting school.

Then that is just plain weird! I would be ticked off. I can understand why the school cares about focusing on the educational impact, but why would a private provider not care about his overall life? Were you able to find other people to evaluate him?

yes I did. I kept going and going until someone listened and worked with us. It was first a social worker who counseled us, and she was the one who picked up on the Aspergers issues. I had NO idea my son was on the spectrum. SHE then made a reccomendation to a psychiatrist, and with HER input to start the ball rolling, we went thru the process and he got diagnosed. Had he been in school and I had a teacher report, it woudnt have taken me as long. They jsut dont care about your home life, it is sad. I have recently hooked up with homeschool friendly psychologist and he has also confirmed the Aspergers diagnosis, with addittional ADHD as well, and possible learning disability due to processing speed.

AFTER I got his diagnosis I brought it to the district, and they flat out REFUSED to honor the psychiatrist reccomendation of an Autism classification thru the district so my son coud get an autism consultant, and I could get a parent trainer. He WAS placed in social skills for the year thru the district (he also gets speech for artic due to cleft palate, and OT for fine motor). They claimed all sorts of rediculous things such as, there is no such thing as Aspergers, it is just wahts given when they dont know waht else it is...my son cant possibly have Aspergers or ASD cause his academic test scores are too high, and my all time personal fav, "You dont want people to read his IEP and think he is AUTISTIC!! !"

Yep, love the school district!

Thanks both for your replies.

It's so disheartening to hear that you experienced this in the US too, attitudes are the same everywhere apparently.

This is what really gets me, they don't seem to care at school how stressed and unhappy the child is, so long as they do as they are told and their work is OK. Some children internalise their stress, they don't all act out because of how they are feeling. I keep getting hinted at by way of comments, to put her back in school (or have it insinuated that home-education isn't good for her in some way or is the cause of her traits/behaviour). If that was the case, if just by home-educating her it's causing her some sort of emotional damage or affecting her development, then why isn't the same expectation and responsibility put on schools?! As a home-educator your provision has to suit not only the educational needs but the overall wellbeing of the child, so why don't schools have this requirement on them too. Why is it all about the academic results and meeting targets, irrespective of the emotional wellbeing of your child.

It's very telling, that on my local authority's website schools section, the whole of the FAQs section is about varieties of problems in school for your child, and what you should/can try to do about them. That speaks absolute volumes.

My daughter used to cry every night at the prospect of school the next day, she would beg me to take her out. She was too scared at school to show the same behaviour she does outside of school. And were it just 'naughty' behaviour I might wonder if it was something I was doing wrong, but she has very clear AS traits. As I also have it, and it has a genetic link it should be cut and dried for the child development unit. They just don't seem to think like that.

In the UK, if you are going through the NHS, which we are, you can't just look around yourself for who to take your child to and there's not even a way of checking the credentials or expertise of who you see.

...and might I turn this on it's head:

Q: What if I put her in school, and she behaves as she did when she was last in school (e.g. working well and being compliant) but continues to explode into meltdowns at home? How do I get round the problem of assessment when the school say everything's fine?

She takes everything literally, does not understand humour/jokes, questions obsessively and incessantly (and only the answer she wants will do, absolutely no other), misunderstands clear conversation/explanations (and is misunderstood) has phobias, has social problems, yadda, yadda, yadda.

In school, she will follow instructions and do her work. They will be highly unlikely to see the above problems, at most they may just notice an anxious child. The work is logical and the school day is structured. As many of us parents of AS children know, and as the experts such as Tony Attwood know, it's the *unstructured* times when most of the behaviours come to the fore. In her previous school, the teachers told me there were 5 staff on playground duty. My daughters both told me this was not the case, there was usually only 1, and my daughter could not speak up when there was a problem. She was hugely anxious over a child misunderstanding something and telling tales on her, and she unfairly got blamed and could not speak up to explain what really happened. Even her teacher noticed she would not speak up when she had a problem (and that's in the midst of a class of 30+).

I know from experience from my eldest daughter's socialising problems at school that even speaking up doesn't resolve socialising issues anyway. She would tell the SENCo about mean things other children had done to her, the other child would lie and counter accuse my daughter and the SENCo would try to push my daughter to admit something she hadn't done! The anxiety this causes such a child is immense.

Who would support my girls in the school system? If they don't even recognise any problem in the first place. I have also read that girls with AS who manage to stay under the radar can become unhinged when they go to secondary (high) school as the pressure becomes too intense and it's where the socialising issues become too large. So because of professionals advocating school for my girls, I could potentially be pushing them towards nervous breakdowns. A school has to believe there is a problem (and even have black and white evidence on paper of it) before they have to provide the support a child needs.

I would therefore face the same problem were my girls in school (if not worse - because the school professionals would be denying everything I say).

Just noticed your question. Yes it is so that she can access support, in the UK you need a diagnosis to access support. I don't have any faith that if I do put her back into school to have a break from her behaviour, that they will be obliged to give her the support she needs. I believe legally they have a greater responsibility if you have a piece of paper stating a diagnosis. It's not a program in the way you might have in the US, in the UK we have the NHS and you are at their mercy. They do it a certain way and you have to just go along for the ride, you don't get to pick and choose, and they certainly wouldn't foot the bill for a private assessment. They are expecting us to wait 6 months, with her behaviour often very extreme, and advising school for her even though I told them of the problems she had last time she was in school.

Let me make sure I understand this. They want you to put your daughter back in school for the sole purpose of having additional input and additional reports. Is that right? NHS is going to take 6 months anyway, yes? What if you put the ball back in there court and tell them you can't consider putting her back into regular school until she has a proper diagnosis? This way if they want additional observations they will have to make them.

If she is too perfect at school, it won't help you anyway, as it will just provide them another reason to do nothing, won't it? Even if it takes them longer without the school documentation, they'd be more likely to come to a correct conclusion than if they have faulty school data, right?

Disclaimer: I am not from the UK, so what I am saying may make no sense.

Also, do they have maybe non-profit advocates you could access for more specific help?

I don't think they advise school purely for the report side, I think being part of the system they just think school is better. But I do get the feeling that they don't trust my opinion and evidence like they would a school teacher's!

I totally agree that I would be more likely to get a wrong conclusion if they based everything on what a school said because she was one of those who held it all in at school, because she was so scared of the teachers telling her off to the point she never spoke up about problems.

I feel totally between a rock and a hard place because I don't think school will be good for her, certainly not without help and she needs a diagnosis to get that help. The paediatrician told me he will write me a letter/report which "would be enough for the school". I don't believe him though. He hasn't even spoken to my daughter! (or observed her). He just spent some time making notes from our conversation and I provided a report on her which I have no idea if he's even read. I really need a break from her but I'm worried about how she'll cope back in school and I don't know what else to do. I can't go on like this for another 6 months.

I think your idea about an advocate might be a good idea that I could look into.

bumping up.

I wish I knew more about how things work in the UK. Can you get her to a university and have someone there evaluate her? Is that a possible way to work around your healthcare system? Though I suppose if it is a valid work around, everyone will be doing it and it will take at least the 6 months you have already been told you will have to wait.

Hi InThisTogether,

thanks for your suggestion. The only two choices here are NHS (which as I say you have to go to who they send you) or private, which is really extortionate.

Someone in the local HE community has recommended a children's centre in the same county as we are in, which does have a team of multidisciplinary people. I've emailed them, and they gave me a price for assessment which was a lot cheaper than other private clinicians. I will be calling them tomorrow to find out if their assessment is an AS assessment or just an assessment of the child's needs/issues, because it's important she has a diagnosis to be eligible for services. Fingers crossed that it does include diagnosis (if appropriate of course) because it's more affordable (less than half what I've been quoted elsewhere) and they sound good. They also liaise with schools, so if she did go back into school that would be good, although until I speak to them I'm not clear whether the parent is expected to pay for that! I can't see the school paying.